You Are Not Alone

You Are Not Alone
A Sourcebook for Support Groups for Families of Children with Cancer
Authors Mark Chesler, Ph.D. and Sara Eldridge, M.S.W., M.P.H.
Executive Director, Director of Publications Ruth Hoffman
Design Layout MLK Designs
Photography Off Broadway Photography
Published by
Candlelighters Childhood Cancer Foundation

3910 Warner Street, Kensington, MD 20895 1-800-366-CCCF, (301) 962-3520 Fax: (301) 962-3521 E-mail: info@candlelighters.org Website: http://www.candlelighters.org
Copyright 2000 by Candlelighters Childhood Cancer Foundation This sourcebook has been commissioned by Candlelighters Childhood Cancer Foundation.
Candlelighters is a 501 (c) (3) non-profit, tax-exempt organization. Our IRS tax-exempt number is 52-1071826.
Printed on recycled paper in the United States.
When you stand in the middle of sadness and sorrow,

with only one candle lit, it is hard to see the light and the candle easily goes out. But with many candles lit, standing together, one cannot help but to see the light and feel the warmth of love.
Taylor, 1997
This Sourcebook is dedicated to

families of children with cancer throughout the world... to all who struggle with this disease... to the children, to their brothers and sisters, to their parents, to other members of their families, and to their friends and helpers in neighborhoods, hospitals, schools and workplaces. We especially dedicate this Sourcebook to those parents who reach out to help and to provide mutual support to one another. Such work is an expression of our common humanity and our willingness to care for and love one another.
Table of Contents
LIST OF BOXES ....................................................................................................................................vii LIST OF PULLOUTS ................................................................................................................................ix PERMISSIONS .......................................................................................................................................xi PREFACE...........................................................................................................................................xiii PART I. FINDING OUR PLACE IN THE BIG PICTURE
Chapter 1. Introduction to Childhood Cancer and This Sourcebook.....................................1 Where does this information come from? How can you best use this sourcebook? Whats in here? What challenges do families of children with cancer face? What makes mutual support groups such a valuable resource? What steps are involved in starting a new group? What should we do? How should we organize ourselves? What skills do we need? Who else do groups work with? What can we expect from the national Candlelighters Childhood Cancer Foundation? Chapter 2. The Stresses of Childhood Cancer .......................................................................5 The initial shock Emotional challenges Informational challenges Practical challenges Social challenges Spiritual challenges Chapter 3. Mutual Support Groups for Parents of Children with Cancer ..............................9 What is mutual support? What is a mutual support group? What do mutual support groups do? Why do mutual support groups work? What are the payoffs? What is needed for an effective mutual support group? Chapter 4. The National Candlelighters Childhood Cancer Foundation ..............................13 What does the national CCCF offer local groups? What does the national CCCF provide for individual families? What do local groups provide to the national CCCF? How can local groups and the national CCCF work together? The International Confederation of Childhood Cancer Parent Organizations (ICCCPO)
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PART II. MEETING THE CHALLENGES OF CHILDHOOD CANCER: WHAT CAN GROUPS DO?
Chapter 5. Surviving the Emotional Roller Coaster.............................................................19 The benefits of sharing What are sharing sessions like? Getting the discussion started Helping the discussion along Offering support to an emotional member Chapter 6. Learning from One Another...............................................................................24 The wisdom of experience Parent handbooks Guest speakers Newsletters Clearinghouses Libraries Chapter 7. Tackling the Nitty Gritty .....................................................................................28 Dealing with the medical concerns Developing and improving hospital and social services available for families of children with cancer Keeping things going at home Bills, bills, bills! Chapter 8. Fun and Friendship ...........................................................................................30 Social events Parent visitation programs Telephone support networks Chapter 9. Searching for Meaning.......................................................................................35 Chapter 10. Empowering Ourselves and Advocating for Change .........................................36 Advocating for ourselves as parents Advocating for our child Advocating with the medical system Advocating with the broader society Chapter 11. Special Projects ...............................................................................................40 Parent consultant programs Oncology camps
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PART III. GETTING THE GROUP STARTED

Chapter 12. First Steps........................................................................................................43 Investigating Finding people to help you Meeting with the core group Making plans Investigating, part II: What do parents want? Chapter 13. Forming the Group ..........................................................................................47 Choosing the groups name Establishing the groups mission Recruiting new members Talking to potential group members Working with the hospital staff to recruit new members Working without staff support Lets get together! Getting your first meeting started on the right foot Chapter 14. Embracing Diversity.........................................................................................53 The separateness of our society Making meetings more visible and accessible Making meetings more attractive and effective Dealing directly with potential discrimination
PART IV. STRUCTURING THE GROUP

Chapter 15. Deciding on the Nuts and Bolts .......................................................................55 Where will we meet? When will we meet, and how often should our meetings be? Is bigger always better? Who are our group members? Guidelines for group membership Formal vs. informal Chapter 16. Group Leadership............................................................................................61 Should leaders of parent groups be parents or professionals . . . or both? Selecting leaders What do effective group leaders do? Leading discussions Leadership transitions . . . passing the torch Chapter 17. Establishing a More Formal Group..................................................................65 The advantages of formality Articles of incorporation Bylaws 501 (c) (3) tax-exempt charitable status Board of directors iii
You Are Not Alone
Chapter 18. Separate or Together? .....................................................................................67 What should groups do? Diagnosis-specific groups Bereavement groups (Sub)Groups for fathers Youth groups Groups for long-term survivors Sibling groups
PART V. MAINTAINING THE GROUP: WERE IN THIS FOR THE LONG HAUL
Chapter 19. Keeping the Group Running Like a Well-Oiled Machine..................................73 The art of communicating Welcome to the group! Orienting new members Getting ideas Decisions, decisions Dealing with conflict Conducting a business meeting Evaluation Chapter 20. Fundraising ....................................................................................................81 Before you start Getting your first hundred dollars Fundraising tools and strategies Some helpful hints Seeking repeat donations Thanking your donors For more information Chapter 21. Reaching Out ...................................................................................................86 Working with the media Outreach activities Taking advantage of the Internet Whats on the Internet? Chapter 22. Endings and New Beginnings ...........................................................................91 When do groups end? What does the end of a group look like? Now what? Ending a formal group Beginning again
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PART VI. WORKING WITH OTHER ORGANIZATIONS

Chapter 23. Working with the Resources in Your Community .............................................93 What are the communitys resources? Organizations to collaborate with on bigger projects Volunteers The American Cancer Society Chapter 24. Working with Schools and Meeting Childrens Educational Needs ...................97 What is the parents role? What are some of the issues faced by children with cancer in the school system? Making the transition back to school a little easier What kinds of help do educators need? What can parents do? Education and the law Developing an appropriate educational program What can mutual support groups do? Chapter 25. Working with the Medical Staff ......................................................................105 How can mutual support groups help? Professional contributions to parent groups . . . and their limits Conflicts happen Professionals concerns about parent groups Roles for professionals with parent groups Using the group to meet challenges Ideas for working with professionals Feedback to professionals Coalitions and alliances!?
PART VII. RESOURCES AND REFERENCES

Appendix A. Resources for Your Group and Its Members .................................................111 Appendix B. References and Recommended Reading ........................................................117 Appendix C. Sample Forms, Materials, and Documents ....................................................121 Appendix D. Reproducible Forms .....................................................................................133
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List of Boxes
1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30. 31. 32. 33. 34. 35. 36. 37. 38. 39. 40. 41. 42. 43. 44. 45.
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Categories of Stress ..........................................................................................................................5 Categories of Stress and Mutual Support Group Activities ................................................................4 Schedule for a Group Leaders Workshop ......................................................................................13 Meeting the Challenges of Childhood Cancer .................................................................................17 Possible Ways to Get the Discussion Started ...................................................................................21 Keeping the Discussion Flowing .....................................................................................................21 Introducing the Parent Guide .........................................................................................................25 Checklist for Planning a Social Event .............................................................................................30 Guidelines for Using the Telephone Calling Card ...........................................................................33 Categories for Making Telephone Contact ......................................................................................33 Guidelines for Making Telephone Contact ......................................................................................34 Discussion Starters: What Would You Do If . . . ? ...........................................................................36 Contacting Legislators ....................................................................................................................38 Our Camp Experience ....................................................................................................................41 Checklist for Meeting .....................................................................................................................44 What Do Parents Want From a Support Group? .............................................................................45 Potential Sources of Referrals ........................................................................................................48 Sample File Card for Referral Contacts ..........................................................................................49 Sample Thank-You Note for Referral Contacts ...............................................................................49 General Guidelines for Talking with Potential Group Members ......................................................49 Benefits of Using a Release Form ...................................................................................................50 Guidelines for Evaluation ...............................................................................................................52 The Different Layers of Membership ..............................................................................................57 Feelings First: An Informal Group ..................................................................................................59 One Day at a Time: A Formal Group ..............................................................................................60 Questions for Group Leaders to Use in Meetings ...........................................................................63 CCCF and ACS Leadership Workshop .............................................................................................64 Situations for Discussion ...............................................................................................................64 Siblings: Having Our Say ................................................................................................................72 Effective Verbal and Nonverbal Communication .............................................................................73 Communication Problems and Solutions .......................................................................................74 The Pros and Cons of Executive, Majority, and Consensus Decisions .............................................75 Guidelines for Making Decisions ...................................................................................................76 A Recipe for Resolving Conflict ......................................................................................................77 Tips for the Chairperson ................................................................................................................77 Sample Agenda ..............................................................................................................................78 Fundraising Ideas ..........................................................................................................................82 Elements of a Formal Proposal ......................................................................................................84 Donation Thank You Letter .............................................................................................................85 Writing a Press Release ..................................................................................................................87 Choosing an Internet Service Provider ...........................................................................................89 Why Groups End ............................................................................................................................91 A New Beginning for a Group ........................................................................................................92 Working with Volunteers ................................................................................................................95 Checklist of Issues for Educational Personnel ................................................................................97 vii
46. 47. 48. 49. 50. 51. 52. 53. 54. 55.
Cancer-Treated Children at Greatest Risk for Educational Complications .......................................98 Individualized Education Program for Mark G. ............................................................................101 504 Plan for Shata L. ...................................................................................................................102 How Groups Can Help with Educational Programs ......................................................................102 Agenda for the Ann Arbor School Conference ..............................................................................103 Back to School Meeting for Parents, School Teachers, and Staff ..................................................103 The Child with Cancer in the Classroom ......................................................................................103 Situations for Discussion .............................................................................................................108 Strategies for Working with Professionals ....................................................................................108 The Therapeutic Alliance .............................................................................................................109
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List of Pullouts
These Pullouts are sample materials and reproducible forms for use by groups. The Pullouts are provided in the appendices for easy reference or photocopying. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. Group Guidelines ........................................................................................................................20 Subscription Form for the National Candlelighters Quarterly Newsletter * ......................................26 Needs Assessment Questionnaire Form * ........................................................................................46 Sample Letter for Making Contact with Source of Referrals .........................................................48 Chart for Evaluating a Meeting * ....................................................................................................52 Group Meeting Questionnaire Form *.............................................................................................55 Group Meeting Site Checklist Form *..............................................................................................56 Group Evaluation Form *................................................................................................................79 Strategies Worksheet *....................................................................................................................80 Group Volunteer Form * .................................................................................................................95
Pullout is repeated in Appendix C for reference. * Pullout is repeated in Appendix D for photocopying.
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Permissions
We are grateful to the following people, organizations, and publishers for permission to use excerpts from their works.
Center for the Advancement of Health, for use of material from Action Against Cancer. Barbarin and Chesler for use of material from Children with Cancer: School Experiences and Views of Parents, Educators, Adolescents and Physicians. Camp Smile-a-Mile of Birmingham, Alabama. Cancer Care, Inc. for use of materials from A Helping Hand. Candlelighters Childhood Cancer Family Alliance, of Houston, Texas. Candlelighters Childhood Cancer Foundation Group Leaders Workshop. Candlelighters Childhood Cancer Foundation Quarterly Newsletter. Candlelighters Canada for use of materials from Candlelighters Canada Parent Support Group Resource Manual. Candlelighters of Brevard Inc., Florida Chattanooga Candlelighters Family Support Group, of Memphis, Tennessee. Checkoway for use of materials from Young People Creating Community Change. Chesler and Barbarin for use of materials from Childhood Cancer and the Family. Crowfoot, Bryant, and Chesler for use of materials from Action for Educational Equity. Deasy-Spinetta and Irvin for use of materials from Educating the Child with Cancer. Families of Children with Cancer News (Toronto, Ontario). Hill for the use of materials from Helping You Helps Me: A Guide Book for Self-Help Groups. Leukemia Society of America for the use of materials from Family Support Group Guidelines. IMPACT newsletter (Maine) and CCCF Quarterly (1988, 13, 1). The International Confederation of Childhood Cancer Parent Organizations for use of material from the ICCCPO Newsletter. Nathanson and the Association for the Care of Childrens Health for the use of materials from Organizing and Maintaining Support Groups for Parents of Children with Chronic Illness and Handicapping Conditions. New Beginnings, Inc. for use of materials from How to Start a Self-Help Support Group. OBrien for the use of materials from Parents and Children Fighting Cancer Newsletter. Taylor and the Rocky Mountain Candlelighters and CCCF Quarterly. White and Madera for the use of materials from The Self-Help Sourcebook.
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Preface
his sourcebook has been commissioned by CANDLELIGHTERS CHILDHOOD CANCER FOUNDATION (CCCF). CANDLELIGHTERS is a national networking organization that links to over three hundred local mutual support groups
for families of children with cancer. It also operates as an educational clearinghouse and provides a variety of informational and support services aimed at improving the lives of families of children with cancer. Founded and governed by parents of children with cancer, and working closely with medical professionals, CANDLELIGHTERS produces a series of newsletters, books, and meetings that are available to local families and parent support groups. The production of this sourcebook was supported by a generous grant from the A. K. Watson Charitable Trust and additional financial assistance from Community Resources Limited (Ann Arbor, Michigan). It is made available as a public service to local support groups everywhere for families of children with cancer. The primary authors of this sourcebook are Mark Chesler, Ph.D. and Sara Eldridge, M.S.W., M.P.H. Mark is a Professor of Sociology at the University of Michigan, a former president of the Candlelighters Childhood Cancer Foundation, and a former chair of the Foundations national board. He is also a parent of two young women, one of whom is a longterm survivor of childhood cancer. Sara is a Medical Social Worker who now lives in San Francisco. Some of the material has been adapted from a prior organizing manual created by Minna Newman Nathanson, and we appreciate her pioneering efforts. Other members of the CANDLELIGHTERS family have made major contributions to various chapters: Mary Helmreich of Houston to Chapters 17 and 20, Lynn Thompson of Alabama to Chapter 11, Jim Luhn of Houston to Chapter 21, Robert Wilbur of Washington, D.C., to Chapter 21, and Laura Lieberman of Washington, D.C., to Chapter 17. Other significant contributions were made by Brad Zebrack to Chapter 18, Carol Benefield to Chapter 18, and Judith Greenbaum to Chapter 24. In addition, Ann Bockelman, Bob Carson, Barbara Chesney, Shirlene Cill, Kay Lesher, Barbara Renhoff, Cathi Smith, Susan Waters, and Landa York have been kind enough to read draft portions of this sourcebook and make useful suggestions for improvement. Ellen McCarthy did a magnificent job of helping to edit the final version of the manuscript. Pat Preston did her usual super-competent job of word processing.
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Chapter 1: Introduction to Childhood Cancer and This Sourcebook

o your child has been diagnosed with cancer. You probably feel frightened, overwhelmed, frustrated, isolated, helpless, or even hopeless. But you have gotten a copy of this sourcebook, which will help you realize that you are not alone. It will, even better, help you meet other people in the same situation, and together you will be able to provide each other with the support necessary to survive under the difficult circumstance of cancer. In the United States approximately eight thousand young people under the age of fifteen are diagnosed with cancer each year. Across the world, two hundred thousand youngsters are diagnosed with cancer each year. During the past twenty years, great strides have been made in the medical treatment of childhood cancers. In the United States, Canada, and Western Europe, for instance, cure rates for all forms of childhood cancer combined now approach 75%. As a result of these medical advances, in the economically advantaged nations there are increasing numbers of long-term survivors of childhood cancer. In the United States, for instance, it is estimated that by the year 2000 there will be two hundred thousand survivors of childhood cancer, representing one out of every nine hundred young people between the ages of fifteen and fortyfive. And current research suggests that most of these survivors will be physically and mentally healthy and able to live socially and economically productive lives. Despite these optimistic results and projections, great stress accompanies a diagnosis and treatment of childhood cancer. Children and their parents, as well as their other family members and friends, experience a lot worry and stress during and after treatment. As a result, many parents of children with cancer have come together to help one another through these special stresses and challenges. In the United States, parents have formed over three hundred local self-help and support groups that are networked through the Candlelighters Childhood Cancer Foundation. In other countries throughout the world, similar groups have formed and are continuing to form. There is a special magic that occurs when parents of children with cancer connect and work with one another to share their concerns. Why do parents connect with one another? How do we connect? How do we help one another? How do we create and sustain local and national self-help and support groups? What do these groups do? How can we help groups to form and operate successfully? This sourcebook attempts to answer these questions and many more. In the following chapters, we share the experience of parents in many local groups around the United States. We also present the results of research conducted with these groups. Our aim is to provide you with a toolkit of suggestions and guides for building and maintaining effective groups that can help parents help one another through the crisis of childhood cancer.
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Where does this information come from?

The material in this sourcebook comes from a variety of sources: from a previous organizing manual written by Minna Newman Nathanson for the Candlelighters Childhood Cancer Foundation and the Association for the Care of Children in Hospitals (Nathanson, 1986); from local newsletters created by groups of parents of children with cancer across the United States; from a similar organizing manual created by the Canadian Candlelighters Foundation (Candlelighters Canada Parent Support Group Research Manual, n.d.); from research conducted by Mark Chesler and Barbara Chesney and published in Cancer and Self-Help (1995); from Sara Eldridges conversations and correspondence with many local group leaders and national board members of CCCF (some of whom have contributed chapters or sections of chapters); and from Mark Cheslers experience as the parent of a childhood cancer survivor and a consultant to many local groups of parents of children with cancer.
How can you best use this sourcebook?

This sourcebook is written for parents of children with cancer who are interested in starting, leading, improving, reviving, or just being a part of a self-help or support group for families of children with cancer. It also will be useful for medical and social service professionals who are interested in helping parents organize such groups. The sourcebook contains lots of tools, information, exercises, and resources, but it cannot cover everything you might want to know. It is a starting point. Each parent group is unique and will choose to pursue different activities, depending upon the needs of its members, its relationship with the local treatment center, its available resources, and so on. Dont feel that your local group can or should do everything in just the ways we have described here. Feel free to use the Resources and References section to gather more information. We chose to use a loose-leaf format so that you can add to these materials as you gain more information and experience. This format will also allow you to duplicate the pullouts and boxes that are most useful to your group. The illustrative material in boxes may be adapted in ways that best fit your local groups needs. The pullouts can be photocopied and distributed to members as you wish, and can be used to start discussions, guide presentations, or be included as program material. Just as each group is different, so different people may wish to use this handbook differently. For instance, we have placed information about what groups do (Part II) before the information about the steps involved in getting a group started (Part III). But you might want to read them in reverse order. You might want to read about the national Candlelighters Childhood Cancer Foundation (Chapter 4) before you read about local groups activ-
ities. That way you can find out where to get help before you even start to think about what to do. You also can call the CCCF office and get help from experienced group leaders through the Candlelighters network. Go ahead! Do it your way! JUST DO IT!
Whats in here?
The table of contents lists the various sections, chapters, and topics of this sourcebook. But heres another way of thinking about whats included here. Heres a list of some of the central questions parents ask about mutual support groups and where you can find some answers to each of these questions. Below this list you will find brief answers to these frequently asked questions. These answers summarize some of the key points discussed in later chapters. For more detailed information on these topics, we encourage you to go directly to the topics that are of greatest interest to you.
Question .........................................Chapter(s)
What challenges do families of children with cancer face?............................2, 18 What makes self-help groups such a valuable resource?...............................................3 What can we expect from the national Candlelighters Organization? ..................................4 What steps are involved in starting a new group?...................................................12-14 What should we do? ............................................5-11, 14 How should we organize ourselves? .......................15-18 What skills do we need? ........................................19-21 Who else do groups work with? .............................23-25 Where can we go for more information? ...........................................Appendices
In some cases, the challenges families face go beyond the five we described above. When a child dies, our families are faced with the difficulties of coping with the expectations of our family and friends, helping our surviving children, and searching for ways to find meaning in our lives again. Cure also has its challenges; our families and children must reintegrate ourselves into work and school and find ways to cope with our concerns about a recurrence. The challenges we face also depend on our age, the childs diagnosis, and the role we play within our family. Our children with cancer struggle with the pain of treatment and the difficulty of being labeled as different by their peers. Their siblings are challenged by a wide range of emotions, as well as the fact that they are not able to spend as much time with their parents and their brother or sister. Fathers may find it difficult to share their emotions and balance the demands of work with the challenges of having such a sick child. Mothers often struggle both with the need to care for a sick child and to support the rest of the family. And depending on our childs diagnosis, we may be faced with challenges ranging from arranging special education services in the school to finding a good prosthesis. For more information about how groups can help members with these specific challenges, see Chapter 18.
What makes mutual support groups such a valuable resource?

Mutual support groups give people who share a common experience the opportunity to help themselves in a very special way. They give parents an opportunity to share their experiences, to give and receive help, and to develop the strength they need to overcome the challenges of childhood cancer. As members of a mutual support group, we have the opportunity to receive support and information from others who know what it is really like to be the parent of a child with cancer. Our common experience helps us realize that we are not alone, and this makes us stronger. The benefits of mutual support groups are discussed in greater detail in Chapter 3.
What challenges do families of children with cancer face?

While every familys experience with childhood cancer is different, research with families from all over the country suggests that most families of children with cancer face the same five challenges. These challenges are emotional, informational, practical, social, and spiritual. Emotionally, we face the shock of the diagnosis and the feelings of anger, fear, frustration, sadness, and hope. The informational challenges involve learning new and complicated information about our childs diagnosis and treatment and the world of medicine. The practical challenges we face include the getting our other children to school and finding a way to pay for everything. We are challenged socially as we struggle to meet the needs of other family members and figure out what people expect from the parent of a child with cancer. And spiritually, we struggle to understand why all of this has happened to us and how we will be able to keep going when everything seems so uncertain. Each of these challenges is discussed in greater detail in Chapter 2.
What steps are involved in starting a new group?

The first step in forming a mutual support group for families of children with cancer is to find out whats already available in your community. Information about existing resources is available from the national office of Candlelighters Childhood Cancer Foundation and may also be found through the social service department of the hospital, the phone book, the community section of the newspaper, or other cancer organizations. You may find a group you wish to join this way. Otherwise, knowing about existing programs will help you evaluate the need for a new group. Another important step in forming a group is to find others who are interested in helping you. Look for people who share your enthusiasm; tell them about your ideas and about what they can expect from their work with the group. When youve found the
people youre looking for, find a time to meet and begin your discussions of what you hope the group will accomplish. You should also begin collecting information about what other parents of children with cancer want. Use this information to help you decide what kind of activities the group will offer. As you develop a clear picture of what the group is about, you can make contact with lay persons and professionals who are in a position to recommend the group to interested parents. Tell these contacts who the groups members are, what kinds of services the group will offer, and when and where the groups meetings will be. Also be sure you provide your contacts with the name, phone number, and address of a group representative. As you meet other parents who might be interested in joining the group, tell them about the groups activities, what its like to be a member, and why you find the group valuable. Your enthusiasm and your willingness to listen can be very effective tools in attracting new members. Take advantage of them. Chapters 12 and 13 have more information about the initial steps involved in creating a new group. Another important step in attracting new members to the group involves making it accessible to parents from many different backgrounds. Place notices about upcoming meetings and activities in places where many different sorts of people are likely to see them, for example neighborhood stores and churches. Provide transportation and childcare to make it easier for parents to get to the meeting. Consider having bilingual aides attend group meetings so that language does not become a barrier. Childhood cancer affects all of us, and we need each other to overcome its many challenges. For more information about making groups accessible to parents from all walks of life, see Chapter 14.
What should we do?

The most successful groups offer a diverse range of activities that are geared specifically toward helping parents overcome the emotional, informational, practical, social, and spiritual challenges of childhood cancer. Offering a variety of activities gives parents more opportunities to become involved and makes it easier to attract and retain new members. Parent groups can help families overcome the emotional challenges of childhood cancer by offering opportunities to share experiences. An effective sharing session allows parents to realize that all of their emotions are normal, put their experiences in perspective, and learn some new coping skills. Guidelines and questions for sharing sessions are described in Chapter 5. To help parents overcome the informational challenges, groups may create handbooks of information to help parents of newly diagnosed children find their way around the medical system and the world of childhood cancer. Groups may also create newsletters with book reviews, pictures, poems, and information about upcoming events. In addition, groups can arrange to have guest speakers come to group meetings and may even create resource libraries and clearinghouses of information. All of these activities are described in more detail in Chapter 6.
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A groups activities can also help families meet the practical challenges of having a child with cancer. Groups have formed babysitting co-ops, provided financial assistance, and established systems for providing lodging to relatives who are visiting from out of town. Groups have also helped recruit volunteers to entertain children in hospital waiting rooms and have played an invaluable role in making members of the hospital staff aware of ways in which they can improve the services available for families of children with cancer. Information about these practical activities is included in Chapter 7. To help parents face the social challenges they experience, groups offer a wide range of social activities. These include everything from summer picnics to ice skating and bowling to holiday parties. A groups social activities may also include a parent visitation program, in which the group matches a parent whose child has just been diagnosed with a veteran parent who can share his or her wisdom to help the new parent navigate the difficulties of having a child with cancer. Another way groups can provide parents with social support is by forming telephone support networks. Talking on the phone gives parents a chance to share feelings with one another, get advice and information, and support one another in between meetings. For more information about social activities, refer to Chapter 8. To support parents as they struggle with the spiritual challenges of childhood cancer, groups can offer a variety of activities. Group discussions about our beliefs and doubts can be quite effective. Groups have sponsored nondenominational prayer services for interested parents and asked members of the clergy to come to group meetings to discuss the role of suffering in our lives. Chapter 9 contains more information about how groups can help parents overcome the spiritual challenges they face. Parent groups can also become involved in efforts to improve the medical system, establish oncology camps, or set up parent consultant programs. Efforts to improve the medical system are described in Chapter 10 and include educating parents about their rights, providing them with opportunities to tell members of the medical staff about their concerns, and may also involve lobbying government officials and raising funds for medical research. Oncology camps offer children and families the opportunity to escape from the hospital and feel normal again. Parent consultant programs provide the group with another way to help parents overcome the five challenges of childhood cancer and an opportunity to educate the hospital staff about what childhood cancer is like from the familys perspective. We discuss both camps and parent consultant programs in greater detail in Chapter 11.
How should we organize ourselves?

There is no right or wrong way to organize a group. The important thing is to structure the group in a way that allows you to meet your goals. For example, it is important for group meetings to be held at a convenient time and place. If parents cant come to meetings, they wont be able to benefit from them. The groups purpose should also guide decisions about how big the
group will be and who will be included in the groups membership. Small groups offer parents more individual attention and make it easier to know others, while larger groups offer parents a broader range of coping skills and life experiences. For more information about the implications of these differences, see Chapter 15. Groups also struggle with decisions about whether or not to become formal organizations with bylaws, a board of directors, and tax-exempt status. Again, the answer depends on the groups goals. Groups interested in doing fundraising and advocacy work often find it helpful to establish themselves as more formal organizations with a tax-exempt status. We describe the steps involved in becoming a formal organization in Chapter 17. The groups leadership is another important part of the groups organization. Groups can be led by parents, professionals, or parent-professional teams. Groups led by professionals are more likely to emphasize formal emotional support sessions, are less likely to raise funds or advocate for changes, and usually dont meet for more than one year. Parent-led groups are more likely to offer a wide variety of activities, including emotional support, social activities, financial assistance, and advocacy. Groups led by teams of parents and professionals have the variety of parent-led groups as well as access to the services and resources of the professionals. In addition, when group leadership is shared among several parents, their chances of burning out are lessened. Chapter 16 will help you choose the leadership structure that will make it easiest for the group to achieve its goals.
Who else do groups work with?

Parent groups interact with a variety of people and organizations. Some of the people that parent groups are most likely to work with are members of the medical staff. These staff members have a number of specific resources that parents and group members need. For example, they have special information and expertise about childhood cancer, about its treatment and long-term outlooks, and about ways people cope with this illness. Staff members also have access to critical hospital services and personnel and can play a valuable role in advocating for the group and recruiting new members. Despite these benefits, it is still important to make sure that the group being run for and by parents; professionals can assist in this process but ought not to (and ought not to be allowed to) take it over and run the group. For more information about relationships between parents groups and medical staff, see Chapter 25. In an effort to meet the educational needs of children with cancer, parent groups also involve themselves in work with teachers and schools. Parent groups can create special programs and support efforts to provide school staff members with information, suggestions, and an accurate assessment of their childrens needs. Chapter 24 contains more information about the issues involved in working with schools. Parent groups also find it helpful to work with the other organizations in their communities. These organizations are a source of volunteers and financial assistance. Community organizations can also help the group by recruiting new members and by collaborating with the group on larger projects, such as raising money to build a Ronald McDonald House. In addition, community resources can be used to provide members of the group with special services, such as grief counseling. For more information about finding and taking advantage of the resources in your community, see Chapter 23.
What skills do we need?

Depending on the groups activities, some skills will be more important to you than others. However, most groups find the skills discussed in Chapter 19 to be very valuable. These include skills in communication, an ability to make decisions and resolve conflicts, and an ability to plan for the groups future. Another important skill for many groups is the ability to raise money. Groups use these funds to pay for a wide variety of services and activities, including the newsletter, financial assistance programs, and medical research. To obtain the funds they need, groups can ask businesses and professionals to donate their skills and materials; they can sponsor fundraising events; they can write grant proposals to get foundation funding; and/or they can solicit donations from individuals and businesses. The steps involved in all of these fundraising efforts are described in Chapter 20. The ability to publicize the group and its activities is another important skill. The more people know about the group, the more they are likely to contribute money and, most importantly, the more likely it is that parents of children with cancer will find the help they are seeking. Groups can raise awareness about their activities through media contacts at newspapers and radio and television stations and via the Internet. Chapter 21 contains a lot of information about publicizing your group.
What can we expect from the national Candlelighters Childhood Cancer Foundation?
The national office of the Candlelighters Childhood Cancer Foundation (CCCF) links hundreds of parent groups like yours across the United States with information and resources that you cant find anywhere else. It links with other medical, educational, and public agencies concerned with cancer issues and advocates for the needs of children with cancer and their families. The national office offers newsletters, training workshops for group leaders, and opportunities for group leaders to share their skills and ideas with one another. The national office also offers a variety of unique services and programs that will benefit the members of your group. These include a resource library, a toll free information hotline, and a pen pal program for young people. Chapter 4 will provide you with more information about this valuable resource.
Chapter 2: The Stresses of Childhood Cancer

utual support groups for families of children with cancer help parents and family members cope with the stresses and challenges they face. In this chapter, we describe these stresses and challenges. Most parents, and most children, cope quite well with these stresses and challenges, but cancer is, well, stressful.
Box 1. Categories of Stress

Emotional
Shock Lack of sleep and nutrition Feelings of defeat, anger, fear, and powerlessness Physical or psychosomatic reactions
The initial shock

The diagnosis of childhood cancer almost always catches us by surprise. Because childhood cancer is relatively rare, none of usno parent or childis prepared for this life-threatening diagnosis. Regardless of the early symptoms, the diagnosis is shocking! This shock is compounded by fears about the possibility of death and anxiety regarding the treatment process that lies ahead. Here are some parents descriptions of their shock upon hearing the original diagnosis. For a while I didnt deal with it; nothing they told me sunk in. They had to tell me three times before I was grasping it. I was bitter and asked myself why it had happened. It was very difficult to take. I left the (diagnostic) room. I didnt know where I went. . . . I know that I was trying to dial numbers and couldnt see the phone. I was so totally alone I didnt know how to function. . . . It certainly was the worst day of my life. Although the pain and stress accompanying the initial diagnosis may fade somewhat over time, this process can be very long. Once treatment starts, families of children with cancer experience a whole new series of stresses and challenges. According to the parents we have spoken with, these stresses and challenges fall into five major categories: informational, emotional, practical, social, and spiritual. Each of these stresses is described briefly in Box 1, and we discuss them in greater detail in the sections that follow.
Informational
Confusion Unfamiliarity with medical terms Not knowing where things are in the hospital Not knowing who the physicians are Lack of clarity about how to explain illness to others
Practical
Disorder and chaos at home Financial pressure Lack of time and transportation Need to monitor treatments
Social
Needs of other family members Friends needs and reactions Relationships with the staff Stigma of being the parent of an ill child
Spiritual
Confusion about why this happened to me Uncertainty about the future Uncertainty about God, fate, and a just world
Source: Chesler and Barbarin, 1987, p. 51.
Emotional challenges
In the face of a threat to the life and well-being of our child, our emotions run the gamut. Recovery from the shock of diagnosis occurs, but slowly. Recovery from worry and concern, if it ever occurs, occurs even more slowly. We ride a roller coaster of ups and downs, joys and fears, as our child goes through periods of vigorous and not-so-vigorous health over the course of a difficult treatment. While on chemotherapy and radiation treatment, our children may lose weight, be fatigued, lose their hair, run a high fever, have mouth and intestinal sores, and be unable to eat. Children who undergo surgery may lose a limb or bear surgical
You Are Not Alone
scars. All may be hospitalized for extended periods or time or be in and out of the hospitaland in and out of school and their normal life activities. We worry about their pain and fear. These are the worries that tear at our guts and hearts. The feeling of helplessness made everything worse. Mothers can usually make anything better but I could not do anything for my dying daughter. When he was in the hospital and cried Do something, daddy, I felt horribly frustrated. I had quite a problem with my stomach. It bothered me. In fact I was close to having ulcers afterwards, but I always had some problems with a nervous stomach . . . when he was in the hospital. And many of these emotional stresses and challenges continue over time, even when children are doing well. I worry when he says Mom, my stomach hurts. And I worry Whats going on there. Oh, no. But as time goes on you learn what to worry about and what not to. It could be the flu or something. I think of the possibility of a relapse every month at blood count time and every three months at bone marrow time. As these worries mount up, we may lose sleep, fail to eat regularly, and begin to experience physical or psychosomatic symptoms. In addition to worry, fear, and frustration at our helplessness, some of us also struggle with feelings of guilt and anger. When a grandparent or friend suggests that the cause of our childs cancer may be our old smoking habit, or some deficit in child-rearing, or a lack of religious faith, we may have to deal with an extra load of emotional stress.
We did ask some questions but it was just so much at a time. I dont really know if we asked the right questions, although the staff would answer whatever we asked them. Sometimes you feel silly asking a doctor over and over again, but it just doesnt sink in. I am a medical professional, but even I thought at the time of diagnosis that it was a death sentence. Then I found out there was a high survival rate and I read everything I could on this form of cancer. And some of these informational issues have grave consequences: We didnt know whether to decide to amputate or have radioactive therapy, and even now we dont know if we made the right choice. There were choices and were still living with them. A great deal of new information has to be absorbed, and it has to be absorbed under conditions of great stress.
Practical challenges
Dealing with a sick child, and with all the other stresses and strains of childhood cancer, raises a series of very practical challenges. Foremost among these is maintaining a relatively normal home and work life, or at least not permitting home and work to dissolve into complete chaos. Our household must be maintained, groceries bought and meals cooked and served, grass cut and snow shoveled, other children fed and gotten off to school, and clothing washed. We must go to work and perform productively. All the normal responsibilities of parenthood and family support must be met, or else we may face an entire series of secondary crises. In the midst of these practical issues of home and family maintenance, the realities of childhood cancer present another set of practical challenges. Depending on the diagnosis, much of the treatment for childhood cancer occurs on an outpatient basis. As a result, parents sometimes become front-line medical caregivers: administering or monitoring the administration of chemotherapeutic drugs, ensuring the cleanliness of catheters, monitoring reactions to treatment and the warning signs of relapse. The child with cancer must be transported to and from the clinic for treatment and checkups, and we must take time off from work or household chores to do so. And some of our families experience serious financial pressures, as insurance companies deny coverage of certain forms of treatment or support services, or if we must travel to a distant location for adequate treatment. Even when medical treatment is fully covered, some of us find that transportation, hospital parking fees, hospital cafeteria prices, and time off from work to care for our child create financial pressure, if not outright disaster.
Informational challenges
As our children enter the long and difficult path of cancer treatment, we are forced to learn a great deal of new and complicated information. We must learn the name and nature of the particular form of cancer, and we must familiarize ourselves with the treatment regimen and the many medications. And we must learn enough to be able to explain our childs disease and treatment to others, because our friends and family members will ask! Essentially, we have to learn a whole new language. In addition, we have to learn the names, roles, and tasks of the members of our childs treatment team. And to top it off, we have to find our way around the hospital so that we can locate the billing office, the social workers office, the cafeteria, the hospital library, and maybe even a place to sleep at night. Here are some statements from parents that reflect some of the informational challenges they faced, especially in the early stages of childrens treatment.
Some parents comments on these practical challenges include: My toughest problem was trying to be a mother to my children at home and trying to take care of her in the hospital. I dont want her or the children at home to feel as if I am deserting them. Our biggest problem was the geographic separation and the travel. I was taking classes in a different city at that time and he had to be in isolation, and I had to go on back to the hospital every day to help deal with it. We had to sell our house because he went through most of my health insurance policy in six months. . . . Recently my husbands been laid off again, and were going through the financial strain again. The bills are bad. I work, but Im still in debt.
Some examples of parents experiences with these social challenges include: I expected my husband to be strong and he wasnt there when I needed him, he crumpled. It was too much of a burden for me so I turned to my family, I turned to my friends, I turned to my coworkers. The little one (younger sibling) feels he isnt getting enough attention at home and hes right. I need some extra help from the school on this one. Some of the people who we thought would be our best friends never showed up for at least a couple of months after. That was particularly tough at the time, because they couldnt handle it themselves. You go back to work and everythings pretty calm for a while. And people at work dont know what to say. So theyre afraid to say anything. Some doctors dont communicate enough . . . some dont care and some are too busy. Especially the ones who care are too busy. Many parents entire social world changed as a result of their familys experience with childhood cancer. Some marriages and friendships become stronger and deeper, while some others become fragmented or break under the weight of these challenges.
Social challenges
Part of our family life involves dealing with the needsphysical, emotional, and socialof all family members, and these needs may become added stresses when time and energy is in short supply, and when the energy that is available is focused substantially on an ill child. We may find it hard to spend quality time with our spouse or with our other children, giving rise to feelings of loss and neglect that add to the stress and strain of the illness. While usually a source of strength and support, our friends, neighbors, and co-workers can also be burdensome at times. All of these people must be told about the illness and its progress, and this adds to our social responsibilities. If the child is of school age, we must deal with the local school system. School personnel may not be aware of the realities of childhood cancer. As a result, they may be ready to overprotect a child doing well or write off as lost any child with that disease. The same situation may prevail as we inform our childs friends of the illness, and try to do so in ways that do not scare them off and lead to isolation. While the child is in treatment, we must learn to relate effectively with the medical staff. Getting to know the staff and understanding each staff members quirks is an important ingredient in a relationship where we have entrusted our childs life and wellbeing to a relative stranger. This is a critically important relationship, and many parents report unfortunate conflicts as well as major efforts to create effective working partnerships with medical staff members.
Spiritual challenges
Childhood cancer is a rare disease. And threats to the life of a child are also relatively rare. Why, then, does this life-threatening and painful experience occur to young and innocent children? We do not know for certain where cancer comes from or how it strikes the young. For many of us, the attempt to understand why our child has cancer, and why or how our child will survive or die from this disease, becomes a spiritual or existential dilemma. Watching the suffering of our young and innocent children turns our ideas of justice and a just world upside down. Confusion about the meaning of this experience, uncertainty about the future, and whether or not to continue to trust in a God who allows this to happen to young children is a spiritual challenge. Some parents describe their spiritual challenges below. I asked myself why immediately. Did we do something wrong at home? I had a flashback on my life. I asked, why is God letting this happen to me? The biggest thing of course is, Why me? Why does this have to happen to me? The answer is, There is no answer. Its almost like bingo, with a different winner every night and a different loser.
You Are Not Alone
I would not have gotten through this without God. I really had to answer for myself what heaven is, and I was satisfied that it is not a bad place. My daughter will be reborn and her death was not the end. Many of us will experience a crisis in our faith, whether based in religion or in secular beliefs, as a result of this experience. Some of us will gain a greater faith and others will draw back from our prior beliefs and commitments. These are some of the most potent and enduring challenges facing us as parents of children with cancer. They have the potential to make us feel powerless; they can sap our energy, our enthusiasm for life and the people we love and live with, and sometimes our abilities to cope with our childs illness and to accomplish what we wish. In trying to meet these challenges and re-empower ourselves, many of us turn to others. We may turn to our partners, other family members, friends and neighbors, professionals, coworkers and colleagues, but we can also turn to other parents of children with cancer. That is what this book is about. How can we help one another in dealing with these stresses and in re-empowering ourselves to live life as fully as possible? What special bonds are formed when people in a similar life crisis find support and help and love one another? And how do we build mutual support groups that will sustain us through these challenges and enable us to overcome them over time?
Chapter 3: Mutual Support Groups for Parents of Children with Cancer

ow can parents help each other survive the stresses and challenges of childhood cancer? This chapter begins to answer that question. We describe the uniqueness of mutual support, the purposes and activities of mutual support groups, and the reasons that mutual support is so effective. As parents who share a common experience, we can be tremendous resources for one another, and this chapter begins to tell us how.
What is a mutual support group?

OK, you say, so thats mutual support. But what about a group? Whats special about a mutual support group? A mutual support group is a more or less organized collection of people experiencing a similar problem or stressful condition who come together to help one another. Generally, such groups operate autonomously, without supervision or leadership from professional social workers, nurses, or psychologists. In fact, when social workers or other staff members lead hospital groups for families of children with cancer, they often are called support groups but they are not peer-oriented mutual support groups. There is nothing wrong with a support group run by medical or social service professionals, but it is different from a group that is run by parents themselves. Mutual support groups for parents of children with cancer come in many shapes and sizes. Some are quite large (thirty to fifty active members and a mailing list of several hundred), while others are small (four to six members). Some groups create a very formal structure, with bylaws, elected officers, and a tax-exempt status (this is especially important for groups that decide to raise a lot of money), while others are quite informal. Some have subgroups and committees that meet weekly, while others meet as a whole on a monthly basis. There is a great variety in mutual support group structures because different groups do different things.
What is mutual support?

Self-help is when people help themselves. Mutual support occurs when parents of children with cancer gather together to help one another, to share their experiences, to give and receive help, and to empower themselves and support one another in their attempts to deal with the stresses and challenges of childhood cancer. This is a special kind of help; it is different from some of the other kinds of help we can get from family members, friends, and neighbors. It is not based on prior friendship and loyalty: other parents of ill children were strangers to us before we met them. Rather it is based on the common bond of being the parent of a child with cancer. Mutual support is also based on the special expertise that we gain as we learn how to parent a seriously ill child. Mutual support of this sort is also different from the kinds of help we can get from medical staff members or psychologists and social workers. For these professionals, giving help to us is part of a job. They are specially trained and employed to be helpful to parents of children with cancer. As a result, they offer the kind of expert help that matches their training and official role. In contrast, other parents of children with cancer are not professional helpers, and they are not paid for what they do. They are volunteers whose expertise lies in the experiences they have been through. They know where we have been and where we are goingthey are us and we are them! Thus, mutual support among parents of children with cancer is very special and unique. It puts us in touch with new companions on what is a difficult and often lonely road. The resources, assistance, and companionship available in mutual support groups are not available anywhere else!
What do mutual support groups do?

The most basic purpose of our mutual support groups is to help all of us respond to the stresses and challenges of childhood cancer that were summarized in Figure 1. Because these challenges are varied, so are our groups activities. However, there are some general patterns. To help us deal with the emotional challenges, mutual support groups may do the following: organize in-depth discussions of parents feelings make time for parents to share their intimate hopes and fearsabout themselves, their ill children, their other children, their partners, and maybe their own parents arrange for speakers to discuss emotional stress provide peer (co-)counseling with another parent assure one another that they are not going crazy give and receive help make referrals for parents who need professional assistance. To help us respond to the informational stresses, mutual support groups may: arrange for staff members to provide lectures on new treatments arrange for panels of staff members or veteran parents to talk
You Are Not Alone
about effective coping styles and how to deal with crises like relapse or surgery organize group discussions or rap sessions create handbooks or guides to local resources create monthly or quarterly newsletters establish libraries of books and materials distribute the newsletters from the national Candlelighters Childhood Cancer Foundation design programs to educate the general public about childhood cancer
Why do mutual support groups work? What are the payoffs?

In community there is learning and caring, and the outcome is greater strength. No one can be fully empowered to deal with the stresses and challenges of childhood cancer alone. It takes the companionship, support, and work of many peoplefamily members, friends, neighbors, and especially other parents who know what is happening to us and who have dealt with these issues themselves. No matter what the activities of a mutual support group, we can learn from and teach one anotherabout childhood cancer, how to deal with challenges, how to live a relatively normal life in the midst of great stress, how to keep marriages and families together, how to deal with the medical staff, how to care for ourselves and our child. No matter what the activities of a mutual support group, we can find other parents who care about us and who we end up caring about as well. New friendships are formed from these encounters. And as many parents report, we can become empowered to feel strong and competent and to exert control over our own and our families lives once again, perhaps even to grow stronger as a result of these sharing and caring experiences. Some parents share their experiences: It helps to talk with people. Knowing that other people have gone through it helps. Out of the group I think I felt isolated, like this was only happening to me. I felt the need to talk and be with people who had gone through it. Your friends sympathize, but at times you need someone whos been there. I found it helpful at group meetings. The people were beautiful, and I didnt feel uncomfortable if I wanted to cry. I saw that sharing what had happened to me and my child was helpful to some others, and that made me feel goodlike I could help others. This is the magic of mutual support groups. They are grassroots, voluntary organizations built and run by people trying to help themselves and others. They represent the best tradition of local democracy in American communities. In addition to finding ways to deal with the stresses and challenges of childhood cancer, parents benefit from mutual support group involvement in a number of other ways. Through these groups we have access to common sense knowledge and to the expertise of medical professionals who come to the group and give talks. In addition to learning more about the disease and its treatment, we can get to know these people better as a result, and that may make it easier to have conversations with them in the hospital or at our childs bedside. Such conversations may also make it possible for us to offer suggestions about ways to improve the medical or psychosocial care offered by our local clinic or hospital. Sometimes as individuals we are afraid to complain or make sugCandlelighters Childhood Cancer Foundation
To help us deal with practical challenges, mutual support groups may: raise money for hospital parking, wigs, prostheses, television access in the hospital, transportation needs, and other services build and support Ronald McDonald houses for parents who have to travel long distances for treatment work with the staff to improve medical caresuch as funding art therapy and school reintegration programs discuss concrete strategies for caring for an ill child, such as nutritional supplements and the care of a broviac catheter inform parents about funeral arrangements To help us deal with the social challenges, mutual support groups may: plan social and recreational events provide respite care provide a place to meet new people and make new friends make it possible for the entire family to come together discuss issues that arise between parents and the medical staff To help us deal with the spiritual challenges, mutual support groups may: talk about religious beliefs and faith help parents make sense out of this situation discuss ways of dealing with uncertain futures create a new sense of community sponsor annual memorial services Of course, not all groups do all of these things. But all groups do try to provide us with a safe place to come and share our experiences, pains, joys, hopes, and fears. The mutual support group is a safe place because it is composed of other people like ourselvesnot frightened grandparents, judgmental staff members, curious neighbors, or awkward friends. In these settings, we can share our own stories and struggles and hear those of others. Most parents begin to understand that they are not alone, and that others have walked the same path. In community there is learning and caring, and the outcome is greater strength.
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gestions for improvements, for fear of the staff thinking ill of us and our child. But the mutual support group, as a group, can make suggestions or raise dissatisfactions in ways that protect the identity of any single parent or childan example of the power of many. In addition, through discussions with other parents we may discover new ways of dealing with stress and new tricks to deal with the many challenges that arise. We may learn what other helpful resources are available in our local schools and communities. As we learn what other parents have experienced, and how they
have dealt with this illness, parents of newly diagnosed children can get a sense of what may be in store for us, and what may not be. And finally, we may find strength in being able to share whats on our minds and in our hearts, and in connecting to the minds and hearts of others. Box 2 illustrates some of these payoffs or benefits of mutual support group involvement. It indicates how each of the activities discussed above (and discussed in more detail in Chapters 5 through 11) may play a role in responding to the stresses of childhood cancer and helping us (re)empower ourselves.
Box 2: Categories of Stress and Mutual Support Group Activities Category of Stress
Emotional Shock Lack of sleep and nutrition Feelings of defeat, anger, fear, and powerlessness Physical or psychosomatic reactions Informational Confusion Unfamiliarity with medical terms Not knowing where things are in the hospital Not knowing who the physicians are Lack of clarity about how to explain illness to others Educate the general public Practical Disorder and chaos at home Financial pressure Lack of time and transportation Need to monitor treatments
Mutual Support Group Activities

Find professional counseling Provide peer counseling Share intimate feelings with people in the same situation
Organize staff presentations Write handbooks Establish library of articles Print newsletters Share information between parents
Collect and distribute funds for wigs, prostheses, and parking Provide transportation and arrange parent lodging Improve local medical care Raise funds for research or added services
Social Needs of other family members Friends needs and reactions Relationships with the staff Stigma of being the parent of an ill child Spiritual Confusion about why this happened to me Uncertainty about the future Uncertainty about God, fate, and a just world
Identify with others in the same situation Meet new people Have someone to talk with Provide respite care
Talk about religious beliefs Share the struggle
Source: Chesler and Barbarin, 1987, p. 214.
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Members of the medical staff also may benefit from the activities of parent mutual support groups. For instance, many groups raise money that goes to support hospital staff and services, thus easing the burden of hospital workers and facilities. Professionals who visit mutual support groups may come to know parents better, thus knowing better how to help us and discovering parents who may be able to help staff members do their own jobs better.
What is needed for an effective mutual support group?

The details of building and maintaining an effective mutual support group are discussed in the following chapters of this handbook. But here are some of the basics: links to the national Candlelighters Childhood Cancer Foundation office a variety of good activities that meet various parents needs a meeting place that is safe and easy to get to meetings that have direction, purpose, and energy several parents who will take active leadership roles time and space for parents to talk with and care about one another collaborative links with the medical staff and community agencies
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Chapter 4: The National Candlelighters Childhood Cancer Foundation
our local group of parents of children with cancer is not alone. There are many such groups across the United Statesat least three hundred that we know about. Most of them are connected through the operations of The Candlelighters Childhood Cancer Foundation (CCCF). This chapter is intended to provide you with more information about CCCF and its relationships to parent groups like yours. We will discuss the ways in which your group can benefit from being part of this national network of parent groups and the things your group can do to strengthen the national organization. Candlelighters Childhood Cancer Foundation is a national educational and networking organization. CCCF was founded in 1970 by several parents in Washington, DC. Since that time CCCF has become the national voice for families of children with cancer. It is a nonprofit organization staffed and directed primarily by parents of children with cancer. It also is the organizer and sponsor of this sourcebook. Local groups and the national office of CCCF are partners in the effort to deal with childhood cancer and its impact on families throughout the country. For more information about CCCF and the issues raised in this chapter call the national office at 1-800-3662223; write to CCCF, 3910 Warner Street, Kensington, MD, 20895; send e-mail to info@candlelighters.org; or access the Candlelighters Web site at http://www.candlelighters.org.
Box 3. Schedule for a Group Leaders Workshop

Held at Camp Smile-A-Miles Campsite in Alexander City, Alabama
Friday 2:00-4:00 p.m. 4:00-4:30 p.m. 4:30-5:30 p.m. 6:00-7:00 p.m. 7:30-8:30 p.m. 8:30-9:30 p.m. Saturday 7:00-8:00 a.m. 8:15-8:45 a.m. 8:45-9:15 a.m.
Registration and check-in Welcome and introductions The art of networking Dinner Who are you? Campfire and smores
9:30-10:30 a.m. 10:45-12:00 p.m. 12:00-1:00 p.m. 1:00-2:00 p.m. 2:00-3:00 p.m. 3:15-4:15 p.m. 4:15-5:30 p.m. 5:30-6:30 p.m. 7:00-8:30 p.m. 8:30-9:30 p.m. Sunday 7:30-8:30 p.m. 8:45-9:30 a.m. 9:45-10:45 a.m.
What does the national CCCF offer local groups?

The CCCF creates a network among the several hundred local groups that are serving families of children with cancer. It does this, in part, by providing telephone contact and liaison with local group leaders and publishing resource materials and a newsletter for groups. In addition, some large local groups reach out to maintain contact with smaller groups in their immediate geographic region. For the past several years, the national CCCF has sponsored a special leadership development program to train members of local parent groups in the many ways they can successfully lead local groups. These workshops cover topics from fundraising to the Internet, and they are a wonderful opportunity for group leaders to meet each other and exchange successful ideas. The schedule of events from a recent group leaders workshop is included in Box 3.
Breakfast News from the national office Discussion about developing a handbook for parents interested in starting and leading parents groups. Providing support to grieving families Getting on the Internet Lunch Starting teen support groups Starting parent groups without the support of the treatment center Discussions for seasoned groups and young groups Free timeboat rides, hiking, canoeing Dinner Family sculpting Campfire and smores
11:00-11:30 a.m. 11:30-12:30 p.m. 12:30-1:30 p.m.
Breakfast Promoting Childhood Cancer Awareness Month Breakout sessions a. Developing a Web page b. Strategic planning Pack up Lunch Closing session
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Just as it helps when parents meet and talk with one another in local groups, it also helps when parents who are active in and leaders of local groups talk with one another. We have so much to share with each other! As leaders in our local groups, we all have important skills, valuable ideas for group activities, productive ways that groups can be organized, and good suggestions for overcoming lack of participation and leadership burnout. In addition to this sourcebook, the national CCCF organization provides important resources for us to develop these skills and opportunities to share ideas with one another.
A penpal program for young people Liaison activities with other agencies and organizations concerned with childhood cancer, such as the American Cancer Society, National Cancer Institutes, Association of Pediatric Oncology Nurses, Association of Pediatric Oncology Social Workers, American Society of Pediatric Hematology Oncology, etc. Information and advocacy efforts with lawmakers and policymakers concerned with childrens health issues
What does the national CCCF provide for individual families?

In addition to providing assistance and support to local groups, the national CCCF directly serves individual families of children with cancer, whether or not they are active in a local support group. For instance, the national organization publishes a variety of publications for families, including: A quarterly newsletter aimed at parents and families Another quarterly newsletter aimed at young people with cancer A newsletter for long-term survivors of childhood cancer, called The Phoenix Books written especially for families of children with cancer, including 1. Know Before You Go, which was written for families who have to travel away from their home town for treatment (Lozowski, 1998) 2. Educating the Child with Cancer, which focuses on school-related issues and offers practical solutions (DeasySpinetta and Irvin, 1993) 3. The Candlelighters Guide to Bone Marrow Transplants in Children, which was written for families of children who are facing or have faced a bone-marrow transplant (Johnson and ODonnell, 1994to be revised in 2000) As the need arises, other publications are created. The staff of the national CCCF provides additional resources and information that helps families of children with cancer. For example: An information clearinghouse A 1-800 toll-free hotline, which any parent or child can use to ask for information, request linkages to second opinions, ask to be placed in contact with an oncology specialist, etc. An Internet site (http://www.candlelighters.org) Access to ombudsmen who can help families solve problems of insurance, discrimination, adequate medical care, etc. An extensive library and on-line database of articles that can be searched upon request and materials provided to parents needing specific information on diagnoses, treatments, research results, psychosocial factors, etc. A speakers bureau of parents and other experts who can visit local groups
What do local groups provide to the national CCCF?

Just as the national organization provides important information and resources to local support groups of families of children with cancer, so too do local groups provide important resources to the national organization. It is the grass-roots effort of many parents and their local groups that gives the national organization its powerful presence when it speaks for parents of children with cancer at the national level. Local groups: serve and advocate for the greatest number of children and their families by uniting their voices through the national CCCF office provide people who serve on the national organizations board of directors (most of the CCCF board members are or were local group leaders who have decided to become involved at the national level) implement nationally designed programs, such as Childhood Cancer Awareness Month voluntarily provide financial support to the national organization
How can local groups and the national CCCF work together?
Local groups for families of children with cancer and the national organization have much to offer one another. The CANDLELIGHTERS name is important. Make the Candlelighters name part of your own. Doing so will increase the name recognition of your group, connect the group visibly and publicly to the larger national effort, and strengthen the national network. If you decide to adopt the Candlelighters name, you are also agreeing to support the Candlelighters mission and to serve parents of children with cancer in a nonprofit venture. Local groups can also play a valuable role in acknowledging the services they receive from the national organization. For example, when passing out national newsletters in the clinic waiting room or at a conference, local groups are acknowledging the national organizations role in publishing these resources. Making others aware of CCCFs existence and its role in supporting families of children with cancer builds CCCFs strength and visibility. In the long run, this strength and visibility also benefits the local group, since everyone will know that the local group is part of a larger and more powerful network.
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Local groups and the national organization also can work together to increase the linkages among local groups. Sometimes several groups in a city or state get together to sponsor joint programs or visits from national officers. Again, this type of collaboration provides another opportunity to share ideas about local group operations and programs.
The International Confederation of Childhood Cancer Parent Organizations (ICCCPO)

In 1994, representatives of organizations of parents of children with cancer in several nations gathered together and formed a new international organization, affectionately referred to as icky-poo. Today ICCCPO, with a secretariat based in Toronto, Canada, has representatives from organizations in over thirty-five different countries. ICCCPO works to address the concerns of families of children with cancer at the international level. ICCCPO publishes a quarterly newsletter of information and ideas about parent activities in different nations and establishes liaisons with international health agencies, such as the World Health Organization and the International Society of Pediatric Oncologists. ICCCPO is especially concerned with the problems of poor and developing nations, where the survival rate for children diagnosed with cancer hovers around 25% (the survival rate is approximately 70% in the United States, Canada, and Western Europe). Problems of malnutrition, poor public health conditions, inadequate funds for chemotherapeutic drugs, inadequately trained and available physicians, and others contribute to these low survival rates. Parent-to-parent assistance, organized through ICCCPO and supported by local groups and the national office of CCCF, can play a role in addressing these issues. For more information on ICCCPO and its role and activities contact the ICCCPO Secretariat in Toronto, Canada, at 416-489-6440.
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16
The next seven chapters contain information about activities that help meet the emotional, informational, practical, social, and spiritual challenges of being the parent of a child with cancer. They lay the foundation for the parent groups core activities. Box 4 sum-
marizes the challenges and the activities your group can undertake to help meet them. You may use this information to get started or to get some new ideas. Feel free to be creative!
Box 4. Meeting the Challenges of Childhood Cancer

Activities have been grouped to show the ways in which specific activities can help members overcome the challenges of childhood cancer. Challenges Emotional
The shock, the lack of sleep and good nutrition, those feelings of anger, fear, frustration, hope and helplessness, the headaches, and that awful knot in your stomach
Group Activities Emotional

Sharing ones feelings with other parents who are in the same situation Visitation programs
Informational
The confusion, and the struggle to figure out what all of those medical terms mean, who all of the doctors are, what the treatment options are, and how in the world youre going to find things in this labyrinth of a hospital!
Informational
Staff presentations Resource library Newsletters Opportunities for parents to exchange information and helpful hints Parent consultant programs
Practical
The disorder and chaos that seem to reign at home, the financial pressure, the lack of energy, time, and transportation, and the need to monitor your childs treatments
Practical
Collecting and distributing funds for wigs, prostheses, parking, meals, bills, etc. Providing transportation for parents Arranging parent lodging Advocating for improvements in local medical care for children with cancer Raising funds for research and additional services
Social
The strain of trying to meet the needs of other family members (siblings, spouses, and grandparents), of having to deal with the reactions of friends and relatives, of interacting with staff members, and of trying to figure what other people expect from the parent of a child with cancer
Social
Meeting new people who care about you and your child Being able to talk with people who really understand what its like to be the parent of a child with cancer The opportunity to enjoy a summer picnic or holiday party without having to explain your smile Cancer camps
Spiritual
The struggle to understand why and how this could have happened if God really loves us and the world is really just; the struggle to keep going when everything seems so uncertain
Spiritual
Having the opportunity to discuss religious beliefs Being able to share the struggle with others
Source: Adapted from Chesler and Chesney, 1995, p. 76. You Are Not Alone
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Those activities that focus on helping parents meet the informational and practical challenges of childhood cancer are some of the most effective and satisfying. But research with parent groups across the country tell us that the most highly ranked activities are those that provide members with an opportunity to meet other people in a similar situation. A groups greatest gift to its members is the discovery that they are not alone in their struggle. As one parent (Taylor, 1997) writes, When you stand in the middle of sadness and sorrow, with only one candle lit, it is hard to see the light and the candle easily goes out. But with many candles lit, standing together, one cannot help but to see the light and feel the warmth of love. It is because of the brightness and hope of our shared light that we call ourselves Candlelighters. Make all of your groups activities an opportunity for parents to share their light with one another, whether its washing cars for a fundraiser or eating hot dogs at the summer picnic.
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Chapter 5: Surviving the Emotional Roller Coaster

any people find that groups help them survive the emotional roller coaster of having a child with cancer by sponsoring sharing sessions. Although emotional support can occur in any context, sharing sessions give us a specific opportunity to share our feelings and experiences with one another. This chapter contains information, advice, and suggestions for activities that will help your group make its sharing sessions as effective as possible.
The benefits of sharing

The opportunity to share our feelings and experiences with one another benefits us in many ways. Sharing sessions help us: realize that all of our emotions are normal! renew our sense of hope that our childs condition will improve and that somehow we will be able to survive all of this learn new ways to cope with and grow from our experience find ways to put our experiences in perspective realize that even in the darkest moments there may be something to be thankful for or to look forward to understand the reactions of other family members by giving them the opportunity to see that everyone goes through this experience in their own way
Adapted from Nathanson, 1986, p.12.
Members of four families, three couples and a widow, get together every other week at one of their homesthey rotate which home. They have a potluck dinner together with all their seven children. After dinner the children play together in a back room, with one of the older children informally supervising the others as they watch TV and play games. The parents gather in the living room, or around the dining room table, or, if the weather is nice, they sit together in the backyard. They talk with one anotherabout their children, about the course of treatment and what is happening medically, about their recent experiences in the hospital and with the medical staff, about their own time and energy and exhaustion, about their hopes and fears. Sometimes they cry and embrace one another. Often they tell of humorous events and laugh a lot together. When its time for everyone to go home, to put their children to bed, they hug and sometimes hold on to each other, expressing their sense of a common bond and the joys of sharing even painful experiences. There is no set agenda or structure to these meetings, but much of importance is accomplished. A more structured meeting might look something like this: It is approaching 7:30 and about twenty people are gathered in a room in the hospital. Six couples, two other men, and the rest women are standing around drinking coffee or juice and munching on doughnuts or coffee cake. Shortly after 7:30, the announced time for the meeting, the group leader goes to the front of the room and calls the meeting to order. She is a parent of a child who has just completed treatment, and she has been elected officially to this position. She asks everyone to go around the room and introduce themselves, briefly to report their names, their childs current situation, and anything important that happened to them or their child in the past few weeks. Some people do this very quickly, stating just their name and saying they are here with their wife or husband. But a few people take several minutes to tell about some moving experience, joyful or painful. When that happens everyone listens very closely, and the leader or someone else will ask a question or two. Sometimes a hug or a tissue is offered. After these introductions the meetings agenda is put forth. Usually it involves group discussion of plans for a specific event or project, perhaps a fundraising endeavor or a plan to create a library
Several parents report the special kind of emotional support they received from other group members as follows: Every man in this room knows how I feel, but other men really dont. I was that way, ignorant and distant, before my son had cancer. The other bereaved mothers were after all the only ones who did understand and who could truly say to me, I know how YOU feel. Just being able to break down and cry and not be held accountable was in itself cleansing. We may never again be anywhere near so many other parents who are struggling or who have struggled with the same issues. Let us keep finding each other and meeting again.
What are sharing sessions like?

Every group approaches its sharing sessions differently. Some groups have a fairly structured approach, while others run these meetings very informally. To help you see the differences between these two approaches, we have included brief descriptions of each. An informal meeting might look something like this:
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for parents in the clinic. On occasion, a guest speaker from the medical or psychosocial staff might attend and present information or lead a group discussionperhaps on family coping, on dealing with childrens school issues, or on problems faced by long-term survivors. Often group discussions are led by one of the parents who has some expertise on the issue under consideration. As the meeting ends, announcements of the time and agenda for the next meeting are made. In addition, the leader asks whether any of the members present would be willing to call and transport a parent of a newly diagnosed child to the next meeting.
Which of these two styles will members of your group be most comfortable with? Or perhaps your groups style will fall somewhere in between. Feel free to experiment. The structure you choose should be the one that makes it easiest for members to share their feelings and experiences with one another. Thats what a good sharing session is all about! Regardless of your groups style, a few guidelines can help establish a supportive and caring environment. These guidelines can be read and discussed at the start of a group sharing session.
Pullout 1. Group Guidelines

This Pullout is available in Appendix C for easy photocopying.
We know that what we share about our personal lives is confidential. What is said in the group, stays in the group.
Each person has the right to take part in any discussion or not.
We share responsibility for making the group work. We encourage group members to share their strengths, skills, successes, and hopes. Each members right to anonymity is respected. We encourage I statements so that everyone speaks for himor herself.
The primary responsibility of the group leader is to ensure that the group is a safe place for its members to disclose their personal stories, fears, etc.
We recognize that there are no right or wrong answers or feelings. We make an effort to consider others and be nonjudgmental and nonprying.
It is recognized that the leader is not the expert.
It is important that we actively listen when someone is talking and avoid having side conversations.
Having benefited from the help of others, we recognize the need for offering our help to others in the group.
We try not to discuss persons who are not present.
Source: White and Madera, 1992.
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Getting the discussion started

Whether a group tends to be formal or informal, the discussion topic for many meetings emerges spontaneously from members comments. But sometimes no clear topic emerges, and the
group needs some help in focusing its discussion. In these situations, it helps to have some possible discussion questions up your sleeve. Box 5 contains a list of possibilities for the group leader.
Box 5. Possible Ways to Get the Discussion Started

Who has been most supportive to you in helping you deal with your childs cancer? What have they done or said that helped the most? Who has been least supportive? What have they done or said that was not helpful? How did you feel/react when you were first told the diagnosis? How has your attitude changed with time and experience? How did your family and friends react when you told them about your childs diagnosis? How did their response differ from what you expected? From what you wanted? What would you say in a letter or out loud to someone who is facing what you have faced? What challenges have you faced and overcome? Which challenges are you still working on? Is there anything that is preventing you from overcoming these challenges? How has your life changed? What new values and priorities do you have now that you did not have before? In what ways does your childs cancer control your life? In what ways have you learned to regain control of your life?
Source: Adapted from Candlelighters Canada Parent Support Group Resource Manual, n.d., p. 68.
Helping the discussion along

Once people are talking, there are a few things the group leader can do to keep the conversation flowing smoothly. Box 6
provides suggestions. (For more information about group communication, see Chapter 19.)
Box 6. Keeping the Discussion Flowing

Keep eye contact with all participants. Simply looking at someone (and smiling!) while youre speaking or listening helps that person feel part of the discussion, even if he/she has not spoken for a while. Address people by name and ask others to do so. This helps people feel connected to the group and makes it easier for them to remember names they may have missed. Notice who talks and who doesnt and be aware of group energy and individual reactions. Glance around the room frequently to check out facial expressions and body language. Watch for fidgeters and those who appear bored. Dont be afraid to call on these people. Keep an eye on unusually quiet people and use your judgment about drawing them into discussion. Let one person talk at a time. If someone does not get to finish a point, go back to that person. If someone tries to contribute but cant get into the conversation, give that person the floor. If a side conversation develops, wait to see if it ends by itself; if it becomes distracting, interrupt the main discussion and make a general announcement that only one person should be talking at a time. (Depending on who is involved in the side conversation, you might want to ask them to share their comments with the group.) Keep discussions on a personal and feeling level. Challenge generalizations such as all men/women are . . . by asking the group if the statement just made pertains to them. Encourage I statements about feeling and experience. If youre not getting them, ask for them. You may feel that you need to share some of your own to pave the way (Has anyone else ever felt that way?). Listen so that you can: Give positive feedback to good points Extend support (That must have been hard for you, or How great that you were able to do that) Call attention to similar or conflicting points of view Notice the trends in conversation Throw questions directed at you back to the group (What do all of you think?).
Continued
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Box 6. Keeping the Discussion Flowing
Continued
Allow some frivolity. Particularly with sensitive or heavy topics, people need to break tension with humor. Pull them back with a direct question. Avoid making judgments and discourage others from doing so. If you feel compelled to give advice, tell only what you would do and emphasize that it is just one persons perspective on the situation or make your suggestion a question: Have you considered trying X? If a group member appears to be making judgments, point out that he/she is expressing one persons point of view and that there are many ways to view a situation. If discussion lags, it may be a difficult topic, you may have a lot of newcomers, there may be another issue of more importance, or it may just be a bad night. You can: Share your own personal experience and ask for support Call on old members who you know are not afraid to
talk, especially if you know theyve had feelings or experiences that are pertinent Play devils advocate, especially if only one side of an issue is being presented Ask the group why they seem reluctant to talk and then talk about that Dont feel compelled to have the answer or to fix the persons problems. The reality is that what people find truly helpful is someone who will listen with their full attention, someone who is interested in understanding how they feel, and someone who respects the persons right to feel the way they do. Enjoy yourself. Dont feel that you have to do all the work. Rely on your intuition and instincts. Feel free to participate and to ask your own questions. Your sincere interest and involvement are contagious.
Source: Adapted from How to Start a Self Help Support Group, 1984.
Offering support to an emotional member

Any discussion about childhood cancer and its impact on families is bound to be emotional, but everyone expresses his or her emotions differently. Some people wait until they are alone to let it all out, while others express emotion openly in front of others. Sometimes the strength of these emotions makes it difficult for members and leaders to know how to respond. In these situations, there is a strong urge to do or say something that will make the other person feel better. But often the most valuable thing you can do is to be still and listen. As one leader put it, Dont just do something, sit there! Some other suggestions include: 50 Letting the person know that their feelings have been heard by saying something like, That must have been very difficult for you, or What an experience! You could also put a hand on his or her shoulder. Pausing to allow a minute or two of silence. By slowing things down you will give everyone a chance to consider what has been said and a chance to identify his or her own reactions. Inviting other members to talk, Has anyone else had an experience like Mikes? How did you handle it? This gives the emotional parent a chance to collect himself and reassures him that others understand what hes going through. Offering the person a chance leave the room, a box of tissues, or a drink of waterand maybe all three.
Helping the member return to the discussion when he or she is ready. A smile is a good invitation.
Listed below are some statements you might hear from parents experiencing a lot of emotional stress. Take some to think about how you would handle each situation. What would you say? How would you feel? What would you do? How would you focus the discussion? How do you think the parent would respond? How would other parents in the group respond? Thinking about these things now will make it easier for you to feel confident and comfortable in emotional situations. You might even use these examples as personal practice activities for you and your group to try out your responses. A mother says, I am coming to the end of my rope with my husband. He doesnt say much, he almost never comes to the clinic with us when our son has treatments, and he is increasingly withdrawn at home. I cant even get him to talk with me, and he hardly looks at our son anymore. I think it is hurting our son a lot. A father says, I think we are just about over the hump. In two weeks we go off treatment and I guess shes cured. Our life can go back to normal, the way it was.
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A mother says, The treatment is going well, but our daughter is behaving badly. She is very angry about losing her hair and the scar from the operation. She hits her younger brother a lot and talks back to us all the time, and her schoolwork is slipping. She is seventeen and she wants to stay out all hours with her school friends, and I dont know what else she is doing. Im very worried. A father says, They have told us that our son is terminal . . . theres nothing more they can do for him except make him comfortable. He wants to come home from the hospital and be at home. A father says, My wife cries all the time. I try to get her to come to these meetings, but she says she sees enough of the hospital and cancer with our daughter. I dont know what to do with her. A mother says, Im afraid Im about to lose it. I worry that our son is not going to make it. Hes our only child. If that happens I dont know what Ill do. Nothing else seems to matter to me. A mother says, I care about what these other people are saying, but I cant keep listening to these stories. I have enough worries of my own and this conversation is starting to freak me out. Id rather not hear this stuff.
These are some of the things that come up, and some of the things we talk about in parent support groups. At times, some parents need to be referred to professional counselors for assistance; at other times we can help each otherwith caring, with love, with advice, and with support. Although it is often very difficult, groups that figure out how to talk about these kinds of issues are able to stick together and help one another.
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Chapter 6: Learning from One Another

eing the parent of a child with cancer requires us to learn a tremendous amount of new information during one of the most stressful periods of our lives. Not an easy task! As parents, we need information about our childs diagnosis and treatment options, about insurance coverage, about community resources, and about the world of doctors and hospitals. Having this information allows us to: provide better care for our children communicate more effectively with the hospital staff educate and update our friends and family This chapter describes some of the informational resources that your group can develop and use to provide parents with the information they need. These resources include the experiential wisdom of the groups members, parent handbooks, guest speakers, newsletters, clearinghouses, and libraries.
A place to keep notes about the childs treatment A glossary of medical terms An introduction to the parent group and its activities, goals, and services Maps of the hospital, the surrounding area, and parking areas Lists of restaurants, hotels, laundromats, and banks Information about financial assistance from community and government agencies Suggestions for talking with siblings, relatives, and friends about cancer Answers to common questions about nutrition, exercise, discipline, and school NOTE: To give you a better picture of what some of these things are, weve included some samples in Appendix D. Theres a form that parents can use to keep notes about their childs treatment, and the CURE groups introduction and summary of their services. Take a look. You may want to photocopy these samples for your parent handbook. In References and Recommended Reading (Appendix B) we have listed several local groups handbooks; you can call the Candlelighters national office for assistance in creating your own.
The wisdom of experience

Hospital staff members can help parents get some of the information they need, but there are some things professionals just dont know. The only place parents have access to all of the information they need is in a parent support group. These groups provide parents with more than just the technical knowledge of professionals: they also provide parents with the experiential knowledge of those who are dealing with their childs cancer experience. Experiential knowledge comes from lived experience, and it includes the kinds of helpful hints that only the parent of a child with cancer could know. Parents share tips on everything from handling the toilet training of a child with chemotherapeutically induced diarrhea to maintaining good nutrition by hiding vitamin pills in Twinkies and chocolate shakes. How many doctors do you know who could tell you something like that?!
Parent handbooks
To the parent of a child who has just been diagnosed with cancer, a parent handbook can be a life saver! Handbooks provide parents with the information they need to succeed in the world of cancer and hospitals, and, unlike conversations with hospital staff, handbooks can be read over and over again, so that parents can learn at their own pace. Most parent handbooks include the following information: Information about the diagnoses, diagnostic tests, treatment options, medical procedures, and medications and their side effects Information about clinic operations, the treatment center, hospital staff members, hospital facilities (banking, television, cafeteria, etc.), and special services (social services, school, playroom, chaplain, etc.)
A groups role in creating a parent handbook can take several different forms. Some groups have the information and funding needed to produce the handbook on their own. Other groups collaborate with the medical staff, who may assist in writing and gathering materials for the handbook or be asked to provide feedback regarding parents reactions to the wording and information. They may also know of other groups in the area that have assembled similar materials. The introduction to the Parent Guide, described in Box 7, is a good example of what can happen when parent groups and hospital staff work together.
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Box 7. Introducing the Parent Guide

The Parent Guide was a collaborative effort between the Families of Children with Cancer parent group and a Canadian hospital. The Parent Guide is a computer program designed to answer some of the common questions parents ask. This program is available on a computer with a touch screen monitor and is simple to use. You dont have to have any computer experience. Using the touch screen and headphones, you can find and listen to information on over 200 topics related to the treatment of cancer. Each topic is presented in a movie thats 30 to 90 seconds long. You can view topics in any order, depending on your interests and information needs. The Parent Guide is divided into three sections. In the first section, Find Your Way Around, youll find maps of the hospital and the downtown area. These identify restaurants, subways, hotels, churches, dentists, doctors, and much more. The second section, Who Will You Meet? introduces you to members of the health care team. The third section, All About Cancer answers questions such as: What tests and procedures help the oncologist diagnose cancer? How can I help my child cope with painful procedures? What community resources are available to assist me? The Parent Guide also has a glossary of commonly used medical terms and a contents section that lets you see the various topics of each section at a glance.
Source: Adapted from Families of Children with Cancer Newsletter, 1997, pp. 12-13.
The effects of chemotherapy and radiation Late effects of therapy on survivors Nutrition for the child with decreased appetite Bone marrow transplants Reintegrating the child with cancer into the school Sibling issues Grandparent issues Coping with death
If you decide to invite guest speakers to your group, tell them what you would like them to speak about, what kind of a group it is, how long you would like them to speak, and whether or not they should leave time for questions. Not only is providing this information a courtesy, it is also an important step in preventing potential misunderstandings. Speakers who dont know how long to speak might talk for the groups entire meeting, leaving you with no time for questions or a discussion. Members of the group can also be wonderful speakers. One group asked a group of young patients to speak to the group. The children all had cancer and ranged in age from eleven to eighteen years. They discussed different aspects of their disease and treatment as well as their feelings and reactions to having cancer. They told parents what they did and didnt want, and they talked about the kinds of things that they did and did not tell their own parents. Afterwards they answered many of the parents questions. Another group asked the parents of deceased children to make a panel presentation to the larger group on dealing with the terminal phase. The presentation covered topics such as preparing for death, dealing with hospice care, and planning a funeral. Whether they are parents, children, or professionals, guest speakers play an important role in helping parents overcome the informational challenges of being the parent of a child with cancer.
Guest speakers
Inviting medical and social service professionals to be guest speakers at meetings is another way groups can help members meet their informational needs. It is also an excellent way to educate staff members: the staff can learn a lot about the needs and concerns of families of children with cancer just by listening to the questions and discussion that follow their presentation. Inviting guest speakers to meetings is also helpful in recruiting new members and in increasing attendance at meetings. Some of the topics you may wish to have speakers address (Chesler and Chesney, 1995, p. 85) include: Research on the causes, treatment, and rehabilitation of childhood cancer Educational programs for the children Finances, taxes, insurance, billing, and record keeping Stress reduction techniques Homecare and hospice Cancer and its impact on the family Cancer and adolescence Pain control
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Newsletters
A good newsletter is an incredibly valuable tool. Newsletters can be used to: help parents meet their informational needs educate the professional community, legislators, volunteers, and donors about your group, its activities, and the needs and concerns of families of children with cancer keep everyone up to date on group activities create a sense of belonging and commitment among members help parents who are unable to come to meetings or who are separated by large geographic distances to feel a sense of connection with the group To be as effective, the newsletter should be well written, and it should include a variety of material. The variety will help keep the interest of new members as well as those who have been involved for years. Below is a list of suggestions for your newsletter from other groups. You may include: A brief description of the groups goals, activities, and services; the name, address, and phone number of the group
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contact person; and the times and locations of group meetings. Your groups newsletter may be a professionals or a newly diagnosed familys only introduction to the group, so it is important to include all of the essentials. Articles written by parents and professionals on issues of interest, e.g. nutrition, education, stress, siblings, etc. A calendar of upcoming events Pictures, poems, and stories by parents and children Reviews of books, articles, and films on childhood cancer Lists of birthdays and good news about families and childrens accomplishments Memorials for children who have died Summaries of relevant legislative issues and guest speakers presentations Thank yous to donors, volunteers, and members Profiles of treatment team members and/or community agencies A subscription form (like the one in Pullout 2) so that those who pick up a copy of the newsletter in the clinic waiting room can be added to your groups mailing list.
Source: Adapted from Nathanson, 1986, pp. 21-22.
The person who creates the newsletter does not have to be the same person who officially leads the group. It often is a good idea to share these and other important tasks among many group members. Then everyone will feel a part and no one will feel overburdened.
A copy of the newsletter should be sent to all the families in your group. You can also send it to members of the hospital staff, volunteers, donors, and people in your contact file. The group might also consider making some extra copies to have available for pick-up in physicians offices, clinics, treatment centers, community agencies, and local libraries. On the other hand, printing and mailing a newsletter can get pretty expensive, so dont worry if you are unable to send your newsletter to all of these people. Reaching families is definitely your first priority. There are several ways you can keep newsletter costs to a minimum. To save on postage, you may wish to apply for a third class bulk mailing permit at the post office. To be eligible for this permit, your group must be registered as a nonprofit organization (for more information about obtaining nonprofit status, see Chapter 17) and follow specific procedures for sorting and bundling newsletters by zip code. You also need to mail at least two hundred copies. There is a similar permit for groups that are not registered as nonprofit organizations, but there is a fee for this permit, and to be eligible you need to send at least five hundred copies of your newsletter. For more information about these permits, call your local post office. Smaller groups can ask their members for self-addressed stamped envelopes to help defray postage costs. Another way to minimize newsletter costs is to find a printer or a copying center willing to donate their services. You may also be able to find a business sponsor willing to donate the cost of printing; you might want to offer advertising space. In addition, some treatment centers and local offices of the American Cancer Society are willing to help with the costs of printing and mailing.
Pullout 2. Subscription Form for the National Candlelighters Quarterly Newsletter

This Pullout is available in Appendix D for easy photocopying.
National Candlelighters Quarterly Newsletter Subscriptions

There is no charge for the Candlelighters Childhood Cancer Foundation Quarterly Newsletter or the Youth Newsletter. Both are sent bulk mail and will not be forwarded if you move. Everyone receiving the newsletters is kept on the mailing list for three years, and needs to renew their subscription at that time. When notifying us of a change of address, please include your mailing label. Send changes/additions to Candlelighters Childhood Cancer Foundation, 3910 Warner Street, Kensington, MD, 20895.
I am:
CL Child Life Worker CY Clergy DR Physician or Psychologist ED Educator GR Parent Group Leader LI Librarian
Send me the Quarterly Newsletter Send me the Youth Newsletter
Remove me from the mailing list Correct my address
Name (and title, if any) _______________________________________________________ Institution (if any) ___________________________________________________________ Address __________________________________________________________________ City/State/Zip Code___________________________________________________________ Phone/E-mail ______________________________________________________________
LT Long-term Survivor: NU Nurse PR Press
child
adult
PT Parent of a child with cancer SB Sibling: TN Patient:
child child
adult teen
Yes! I would like to help children with cancer and those who care for them by making a tax deductible gift of: $25 $50 $100 $500 $1,000 Other $______
The Candlelighters Childhood Cancer Foundation is a national 501 (c) (3) non-profit membership organization whose mission is to educate, support, serve and advocate for families of children with cancer, survivors and of childhood cancer and the professionals who care for them.
SW Social Worker

UM Member Umbrella Coalition OTHER (please indicate)_____________ _______________________________
Thank you for supporting Candlelighters Childhood Cancer Foundation!
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However, when investigating the possibility of a donation, find out if there are any strings attached. Sometimes donors want control over the content of the newsletter. It helps to know these things ahead of time! If you are lucky enough to find someone who is willing to help with printing and mailing, be sure you acknowledge them in the newsletter.
Clearinghouses
Groups also help members meet their informational needs by establishing a clearinghouse of information on childhood cancer. Doing so requires a lot of research! Public libraries, hospital libraries, medical school libraries, and the Internet (e.g., Medline) are good places to start. You should also investigate local, state, and national support programs available for families of children with cancer. Additional sources of information are included in the Candlelighters Bibliography and Resource Guide (1994) published by the Candlelighters Childhood Cancer Foundation. Some of the specific areas on which you might want to collect information include: specific cancer diagnoses treatment facilities physicians and specialists eligibility requirements and services of private agency and government programs Once youve collected all of this information, you can create a bibliography, set up an information hotline, and/or create a resource library.
Some of the materials you may wish to include in your library are books, articles, and videos on childhood cancer, recordings of presentations made by guest speakers, books for children and siblings, and/or copies of the groups newsletters. Keep a list of these resources and group them by subject. That will make it much easier for people to find what theyre looking for! Include a label like the one below on the materials in your library. These labels are free publicity for your group, and they are good insurance against losing materials. Here is a sample library label: This material has been donated to Childrens Hospital by the Hometown Candlelighters Group, 123 Main Street, Hometown, USA 00000 Once youve accumulated resources for your library, youll need a place to keep them, and youll have to make some decisions about how and where they are to be used. Heres a list of questions you may wish to consider: Will parents be allowed to take borrowed materials home with them? How long can materials be checked out? What sort of check-out procedure will you use? Do you want to keep the library at the hospital? Do you want to bring the library to group meetings? One last piece of advice: add to your library whenever you can. Ask members and professionals to donate materials that they have found especially helpful. The more materials you have, the more successful you will be in helping parents meet their informational needs.
Libraries
Establishing a resource library is another way your group can help its members overcome the informational challenges of childhood cancer. These libraries provide parents with a resource that is difficult to find anywhere else. As one parent (Watchhurst, 1997, p. 5) explains, On one occasion, we left the hospital for a walk to the Worlds Biggest Bookstore. Our purpose was to find information on our sons cancer and treatment, but we were so confused by what we saw there that we left empty handed. Shortly after (at a parent group meeting) we found the Families of Children with Cancer library . . . what a G-dsend! The library provided us with information we could read and reread at our own pace, and slowly but surely we were able to learn as much as we could about Alexanders cancer and treatment. I also found tremendous comfort in particular books of inspiration, such as those offered in the Chicken Soup series. They still give me comfort fifteen months later. Thank you very much for providing this wonderful resource. It is a lifeline to those of us who are the caregivers for our beloved children.
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Chapter 7: Tackling the Nitty Gritty

eeping up with the nitty gritty details of life is never easy, but it is especially challenging for families of children with cancer. In this chapter, we focus on the ways in which mutual support groups can help parents deal with the practical details of caring for a child with cancer. Lets face it: having a child with cancer takes a lot of time and energy and can cost a lot of money. Some families dont have the extra time and money they need to pay the electric bill, buy food, fix dinner, drive the carpool, pay parking fees at the hospital, mow the lawn, keep up with household repairs, and hold down full-time jobs. For families in this situation, the practical support activities of a parent group are crucial.
Dealing with the medical concerns

One of the ways parent groups serve their members (and other parents as well) is by helping them deal with medical problems and concerns. For instance, some groups establish blood donor programs and help members search for bone marrow donors. More commonly, groups provide parents with practical hints regarding how to cope with the issues involved in caring for a child being treated with cancer. Some of these include: how to deal with the medical staff how to monitor a broviac catheter where to go for information on nutritional and dietary supplements how to deal with a child who is toilet trained but has now lost that control as a result of medications or fear when to call the doctor what are the signs of a relapse what are the side effects of chemotherapy Many parents have found effective ways of dealing with these issues or know where they can get the information necessary to deal with them. As group members discuss these and other issues they can share experiences and ideas with one another.
McDonald houses, or related facilities, where families who must travel long distances for treatment, or whose children are hospitalized for extended periods, can stay near the hospital at low cost. In these facilities they also can meet and find comfort and companionship with other parents of children with cancer and other life-threatening illnesses. Families who must leave home to take their child to another city for treatment should especially consult the Candlelighters publication, Know Before You Go (Lozowski, 1998). Groups also sponsor programs to make life in the hospital more bearable. One group started a Toy Chest Project for children who come to the clinic. Children select a treasure from the chest before they go home and trade their tears for a smile. In addition, groups arrange to have parents visit families who are with their child in the hospital and volunteer in the hospital playrooms. Groups members also volunteer to read to children while they wait for their appointments. Some groups are also involved in the very practical task of helping to improve their oncology clinics delivery of medical and psychosocial care. Many parents acting together can recognize and draw attention to issues that might escape the notice of any individual parent. The practical benefits of this type of group effort are so important that we address them separately in Chapter 10. For a more in-depth discussion of what parent groups can do to help parents work with the medical system, see Chapter 25.
Keeping things going at home

Perhaps the greatest practical challenge to parents with an ill child is the need to keep family life going in as normal and positive a way as possible. This means paying attention to all family members concerns, especially siblings of the child with cancer. It is common for parents (and grandparents, friends, and neighbors) to focus so much of their attention and concern on the ill child that other children in the family feel left outand maybe jealous, hurt, or angry as a result. Even siblings who understand the serious nature of the illness, and who know that their parents love them, may feel left out and shunted aside during a crisis. We all know that this crisis may last for some time! Some groups have held special sessions devoted to this topic and have invited panels of siblings to share their views and experiences with parents, including their views on what parents should do for and with them. The feeling of being left out also often affects grandparents. After all, they not only are concerned for the ill child and siblings, they also are feeling the pain that their own childrenthe parents of the child with cancerare going through. In a mutual support group setting parents can also share their experience in organizing family members and friends to provide help and support around the house, cooking meals, making repairs, providing respite care for parents by taking care of sibCandlelighters Childhood Cancer Foundation
Developing and improving hospital and social services available for families of children with cancer
Because parents know from our first-hand experiences what services families of children with cancer are looking for, parent groups have played an important role in developing and improving available services in many hospitals. Parent groups have formed babysitting co-ops, established wig banks and prosthesis exchange systems, provided lodging for relatives who are visiting from out of town, provided respite care for parents who need a day off, and arranged carpools to help families get to clinic appointments and group meetings. Several groups have helped to create local Ronald
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lings. Some groups also organize holiday programs to collect toys and food or ask individuals and businesses to adopt a family for the holidays. Adopted families receive toys, gift certificates for a holiday meal, clothing, Christmas trees, decorations, and more. For a family with no time to cook and a budget too small for gifts, these programs are one more reason to celebrate the holidays. Finding ways to deal with local community agencies, including the school system and recreational facilities, is another practical challenge for many families. In Chapter 24, we address the role mutual support groups can play in easing the path of children with cancer in school.
Bills, bills, bills!

There are as many ways to provide families with financial assistance as there are bills to pay. Some groups establish an emergency cash stash from which families can borrow money. There is no interest on these loans, and there is no deadline for repayment. Families reimburse the fund when and if they can, so that it is available for others. Other groups raise funds to reimburse families for specific expenses. These expenses include things like rent, groceries, clothing, and phone and utility bills. Groups may also have special funds for families whose children are being treated out of town. These funds help families pay for food, lodging, and transportation to and from the treatment center. Some parent groups raise money to provide patients and siblings with school scholarships, pay for funeral expenses, and help a child go to camp. Some even have prescription drug programs to help families with the out-of-pocket expenses of prescription drugs for their children. For more information about fundraising, see Chapter 20. If your group is interested in providing its members with financial assistance, you will need to establish some eligibility requirements. Some groups ask families to complete financial statements, while others require a letter from a social worker to certify the familys financial need. There are also groups who use the honor system. These groups give assistance to any family that requests it. In addition to having clear eligibility requirements, your group will need guidelines regarding the allocation of group funds and detailed records of how funds are spent. To get some ideas about what should be covered, see Appendix C for the guidelines used by the Chattanooga Candlelighters Family Support Group and Candlelighters of Brevard (Florida).
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Chapter 8: Fun and Friendship
arent groups social activities play an important role in helping parents overcome the social challenges of having a child with cancer. This chapter contains information about a wide range of social activities. Some are as informal as a summer picnic, while others, such as a parent visitation program, require a little more formal organization. Despite these differences, all of the activities in this chapter offer parents the opportunity to have fun and form friendships with other parents who really understand.
lawn chairs, blankets, baseballs, Frisbees, volleyballs, and so on. Some families head straight for the playing fields, while others are happy to sit and relax with their friends. It is a great day with something for everyone! Potluck dinners: Candlelighters of Southwest Florida, Inc., sponsors a Memorial Day potluck. Families sign up to bring all the essentials for a wonderful meal. And rumor has it that they specialize in desserts. Holiday parties: Whether its an Easter egg hunt, a Halloween party, a Valentines Day dance, a Christmas party, or a celebration of the New Year, holiday parties are a lot of fun. To keep the costs of these events at a minimum, try to find restaurants willing to donate the food and companies willing to donate toys and decorations. Thank them in your newsletter! There are so many possibilities! But dont feel that your group has to do them all. The number of social events your group arranges will depend on the interests of your members and the amount of time and energy available. The steps involved in planning a successful social event differ depending on the type of event you are planning, but the checklist in Box 8 can help you cover the basics. Delegate as many of these tasks as you can!
Social events
Social events are often a parent groups most popular and widely attended activities. They give families a chance to relax and have fun in an atmosphere where everyone knows what they are going through and where there is no need to explain their smiles, their tears, or their childs condition. As families trade stories about their experiences, new friendships form and older friendships are strengthened. These friendships relieve the loneliness and isolation that some families experience, and they almost always mean more opportunities to socialize. Families plan camping trips together, they go on picnics, they celebrate birthdays and graduations, and they build friendships that can last a lifetime! While social events are intended to give families a chance to relax and have fun, they are also opportunities to learn from one another. Seeing how other families interact with one another and how they have adjusted to the changes in their lives may give people a new perspective on their own situation and an opportunity to see different coping skills in action. Social events are also a great way to recruit new members. Newcomers frequently feel more tempted by the prospect of a barbecue than an emotional sharing session. Social events give newcomers a chance to meet people in a more relaxed environment, and they go a long way toward reassuring them about the group. Once parents feel more comfortable, they are usually interested in coming to other group activities. There is tremendous variety in the social activities that groups plan for their members. Some events are for the whole family, while others are for specific family members. The Rocky Mountain Candlelighters group sponsors a special golf outing for dads and an evening of facials, massages, junk food, and laughter for the moms. Groups also organize parent dinner parties and a whole range of activities for Candlelighters kids and their siblings, such as ice skating, bowling, pizza dinners, miniature golf, swimming the list goes on and on! Other social events include: Summer picnics: Candlelighters of Brevard, Inc., has an Afternoon in the Park. They provide the hamburgers, hot dogs, drinks, and paper products, and families bring their favorite side dishes. Families also bring their own
Box 8. Checklist for Planning a Social Event

Ask group members about the kinds of social events they are interested in. Decide on the activity (potluck, barbecue, picnic, holiday party, outing, etc.) Announce the activity at least a month in advance. Use your newsletter and/or make a few fliers. Make arrangements for food and drinks. If its a potluck, send around the sign-up sheet and ask people to bring main dishes, desserts, drinks, salads, side dishes, paper products, etc. For other events, you may wish to ask local restaurants to donate food. Choose a location and make the necessary arrangements. If its hard to find, you might want to make a map for people. Arrange for any necessary entertainment. Recruit someone to play Santa Claus, get a volunteer to do some face painting, ask parents to bring their baseball gloves and Frisbeeswhatever fits the occasion!
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Parent visitation programs

A parent visitation program is another way groups can provide opportunities for social connection with other parents who understand the challenges of childhood cancer. These programs match veteran parents with other parents whose children have recently been diagnosed with cancer. There are several kinds of parent visitation programs, and guidelines are provided in Making Contact: A Parent to Parent Visitation Manual (Bogue and Chesney, 1987). Formal programs are usually run in conjunction with the treatment center and include training sessions for parents interested in becoming visitors. Formal programs also have specific procedures for getting referrals and arranging visits. Informal programs can be run without staff support and allow parent visits to happen more spontaneously. Interested members of the group may take turns visiting the clinic and offering support to the families they meet. More important than the circumstances in which parents meet each other are the benefits that come from their meeting. As fellow parents of children with cancer, parent visitors offer what no friend, staff person, or family member can. They offer the wisdom that comes from their personal experiences and a unique understanding of the challenges involved in being the parent of a child with cancer. Parent visitors use their experiential wisdom to help parents: tell friends, relatives, teachers, and co-workers about their childs cancer negotiate the treatment center maze understand new terms and gain access to information focus their questions and record their answers, so that they can be as effective as possible in contributing to their childs care gain access to financial support relax and smile in the midst of the struggle regain their sense of hope For a parent who is struggling with his or her childs diagnosis, these gifts are priceless! When describing her relationship with a parent visitor, one parent says, I dont call her very often. But when I feel like Im crazy or the only one who ever went through this, shes there. Sometimes just knowing I can call helps and I dont talk at all. There were times I dont know how I would have made it through without her. Parent visitation programs can also play an important role in recruiting new group members. Parents are usually more willing to join if they have met one of the groups members. Spending time with a group member also gives parents a chance to ask questions and to experience first hand how beneficial the group can be. In addition, parent visitation programs increase the groups visibility. Establishing a parent visitation program can be as good for your group as it is for the parents you visit.
Starting a parent visitation program. The steps involved in starting a somewhat formal parent visitation program are listed below. If your group has chosen to pursue a more informal program, you may wish to skip some of these steps. All you really need to get started is one or more parents from your group who are willing to share their experiential wisdom with others, families who want contact with other parents, and a way to bring them all together. Recruit parent visitors. Ask members of your parent group if they would be interested in becoming a parent visitor. Visitors should be sensitive, compassionate, accepting, and able to share their feelings and experiences without overwhelming other parents. Visitors should also have some perspective on their own familys experience with childhood cancer. Generally speaking, visitors are self-selected and their willingness to volunteer may be taken as a sign that they are ready to help others. Provide training for parent visitors. A training program will enhance visitors natural helping skills and can go a long way toward reassuring hospital professionals that visits will be helpful and not upsetting. Training programs should include information about childhood cancer, diagnosis, treatment options, comfort measures for children in treatment, hospital routines, community resources, and the ways in which childhood cancer can impact a family. Training programs should also include sessions on listening, nonverbal behavior, problem-solving techniques, and how to talk effectively with parents who are under a great deal of stress. The most effective training programs use both parents and professionals. Additional training materials are available from the national Candlelighters office and in Making Contact: A Parent to Parent Visitation Manual. Get referrals. To be successful, a parent visitation program must also identify parents who are interested in being visited by another parent of a child with cancer. These parents include those whose child has been newly diagnosed, those whose child has relapsed, and those whose child has died. Staff members can be very helpful in identifying these parents, but you may also want to solicit referrals from the other people in your contact file. (For more information about starting a contact file, see Chapter 13.) Ask the person making the referral for the names of the parent(s) and child, the timing and the nature of the childs diagnosis, and information about how the child is doing now. It also helps to know what the child has been told about his or her diagnosis, whether the family knows that a referral has been made, and whether or not the family is dealing with any other stressful situations.
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Match the family with a parent visitor. It helps if the parent visitor has had experiences similar to those of the family they will visit, but this is not necessary, nor is it always possible. Before the visit takes place, the parent visitor should be given the referral information. Make arrangements to visit the family. Find a convenient time and place, and reassure parents about the confidentiality of your conversations. Many parents want to know if members of the treatment team are told about the visits and whether their contact with a parent visitor is going to affect the type of treatment their child receives. Visit with the family. Every visit is different. Depending on the familys situation, you might just listen, you might take them shopping, or you might sit with the child so that the parents can get a little fresh air. Reassure the family and the visitor(s) about the confidentiality of these visits and conversations. Parents will feel more comfortable sharing their feelings and experiences, as well as their questions and concerns, if they know their identities will be held in confidence. Staff also will be more likely to make referrals to parent groups if they know group visitors will respect parents privacy. Do some follow-up and evaluation of the visits. Collecting information from visitors and families about their experiences and reactions will help you improve your program. The information should be kept confidential. Provide your parent visitors with opportunities for support. Organize meetings for the parent visitors. These meetings give visitors a chance to support and encourage one another, to learn from each others experiences, and to receive any additional training.
Telephone support networks

Phone calls are another wonderful way to strengthen the social connections in a parent group. Talking on the phone gives parents a chance to share their feelings with one another, get advice and information, socialize, and offer one another support between meetings. A simple phone call can also link group members separated by large geographic distances and can bring the magic of the group to a parent who is staying with his or her child at the hospital. In many groups, telephone support is informal and spontaneous. Parents call each other as the need arises. But for groups separated by large geographic distances, these spontaneous calls can get pretty expensive. To prevent this expense from becoming a barrier, some groups provide members with a credit card number they can use to call one another. Groups finance these programs with funds from their own treasuries or by soliciting the support of local companies. Groups usually try to get support from several companies so that each of them only has to cover the cards expenses for a month or two a year. Credit card programs have been very successful in a number of groups, and they are rarely abused. Establishing clear guidelines will help your group prevent abuse. The guidelines in Box 9 were developed by IMPACT, a Candlelighters group in Maine.
For more information about starting a parent visitation program, please contact the national office of Candlelighters Childhood Cancer Foundation at 1-800-366-2223.
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Box 9. Guidelines for Using the Telephone Calling Card

1. The credit card number is to be used only by IMPACT families to call and talk to other IMPACT families for support or for the purpose of conducting IMPACT business. The number is not to be used for any other calls, including those to family members, physicians or other health care team members. Calls to the medical center to talk with hospitalized families are permissible. The only exception to this is for families of children undergoing bone marrow transplants. Only then, the number can be used to place calls home, at least periodically, keeping our guidelines in mind. 2. The number will be given out by the Board of Directors to the membership on an individual basis and shall not be published. References of need can be brought to any member of the Board of Directors, our advisor or pediatric oncology social worker. All persons possessing the number shall be registered with the Treasurer. 3. It is imperative that all members possessing the credit card number guard it as they would any important number against theft and abuse. The Treasurer should be notified of any problems and may need to call members concerning usage as needed. We do not wish to place limits on length and frequency of phone calls; however, please realize that our funds are limited. 4. Members should use the number in the evening or other off peak hours, if possible. 5. To protect our interests, the credit card number shall be changed periodically, or as needed. 6. Bills shall be submitted to the Treasurer for examination and payment.
Box 10. Categories for Making Telephone Contact

ALL (Acute lymphocytic leukemia) Bereavement AML (Acute myelocytic leukemia) Bone marrow transplant Brain tumors Hodgkins lymphoma Neuroblastoma Osteogenic sarcoma Ovarian cancer Rhabdomyosarcoma Testicular cancer Wilms tumor
Source: Nathanson, 1986, p. 14.
Dying Hickman catheter Preschool child School-aged child Sibling support Single parent Teenager Teen peer support
Groups can also establish telephone buddy systems. These systems link the parent of a child who has just been diagnosed with a veteran parent whose child is close in age and has a similar illness. As valuable as it is, offering and receiving support over the telephone can be challenging. Being on the telephone prevents you from seeing the emotion in the other persons face and from being able to comfort him or her with a hug. The guidelines from the Postpartum Education for Parents (PEP) group in Box 11 may help you overcome these communication barriers.
Groups with more formal systems for telephone contact between members may designate one parent to be the contact person for the group. These contact parents provide callers with the support and information they need. Groups can also establish special directories of parents who are willing to discuss particular issues and/or diagnoses. Some of the categories used by one Candlelighters group appear in Box 10.
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Box 11. Guidelines for Making Telephone Contact

The Emotional Call
Always be sensitive and nonjudgmental. Respect the parents values, even if they differ from yours. 1. If the caller is upset, try to put him or her at ease and help him/her to relax. Show genuine concern; be calm; and dont rush the parent. You set the tone for the conversation, so the more genuine, warm, relaxed, and responsive you are, the more effective you can be. 2. Reassure parents about the normalcy of their feelings. Explain that many parents in their situation have similar feelings and experiences. Be careful not to minimize the problem by saying, Oh, everybody goes through that! 3. Help the parent find solutions by: a. encouraging him or her to express their feelings and to define the problem b. encouraging the parent to come up with his or her own solution. Find out what they have tried, what happened as a result, and what some of their other alternatives are. c. suggesting additional alternatives and letting the parent decide which one is best. Avoid giving advice and telling the parent what he or she should do. 4. Call back in a few days to find out how things are going. The parent may be embarrassed about calling you again. 5. Let the caller know that you are a parent, too. You may even want to share some of your experiences with him or her.
The Informational Call

1. Answer requests for information as best you can or refer the caller to someone else. If you sense that making another call will be difficult for the parent, offer to have someone call the parent back with the information they are requesting. 2. It is okay to say, I dont know. Never hesitate to research a question, refer a problem, or call a resource for consultation.
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Chapter 9: Searching for Meaning

or many parents, dealing with childhood cancer means struggling with prior understandings of the nature and purpose of life and the role of faith. Our efforts to care for our children and ourselves can lead us to question our religious or secular assumptions, and in many cases to form a new relationship with G-d. Mutual support groups make it possible for us to discuss these issues, to share our frustration with or our reliance on G-d as a way of understanding and dealing with this illness. Several different kinds of group activities are useful in this struggle. In some groups, parents talk with one another about these matters of faith. This can lead to comparisons of different peoples views of the role that G-d and faith play in their lives as well as their beliefs in a hereafter. Some groups even sponsor prayer services for their own and others children. In this regard, it is important to conduct nondenominational sessions, since parents come from different religious traditions and do not pray the same way or believe the same things about G-d and G-ds relationships with humankind. Some parents come to believe that G-d has given their child this illness as a way of testing or strengthening them and their convictions. These parents respond very differently from those who believe the illness is simply a fateful accident. But both may rely upon prayer and religious beliefs to support and comfort them throughout their childs treatment. Some local groups set aside special sessions where these matters can be shared and discussed. Others arrange for members of the clergy to come and speak about their own understanding of the role of illness in G-ds plans and the role of faith in providing strength and support during a serious illness. In a somewhat different vein, we may have struggles with other matters of faith and belief that are not of a religious natureones that are more secular. For instance, most of us have faith in our own and our childs future. Many of us also have a sense of the meaning of our lives that are bound up with our childrens lifepaths. These more secular faiths also are severely challenged by a childs life-threatening illness. For instance, what happens to our plans for our childrens education, our expectations of grandchildren, our saving money for our childs future, and our own retirement, when that childs life, and thus our own sense of the future, is threatened? Do we give up those plans? No. Our child may survive, and, even if he or she does not, our own future goes on. But our notions of these futures may have to change, and our plans may have to be revised.
Intimate conversations among people sharing the common fate of being a parent of a child with a serious illness can create new visions of the future and new wisdom that can ease our uncertainty and fear. Among the results of such conversations often are fathers or mothers decisions to spend more time with our families and their children. Instead of having the meaning of our lives rest on worldly gain, new meaning may come from more intimate and sustained family lives. Some parents comment on the ways conversations in a mutual support group helped them make such changes: I dont stress anything anymore. What happens happenswork, financesId rather enjoy my child than worry about finances. I spend more time with the family and less time off by myself. I have changed my philosophy of life. I take every Friday off to be with my sonevery day with him is a celebration. Ive sold my businesses and have cut back to spend more time with my family. Conversations with others also allow us to be a part of a community of people who care about one another and what we are experiencing. That is what a mutual support group is all about. In these groups those of us who are suffering a common fate are bound to one another deeplynot forever, but for as long as we are in need. And in this bonding comes a special form of comfort and the ability to gain new meaning from the common struggle.
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Chapter 10: Empowering Ourselves and Advocating for Change
s parents, we are our childrens protectors and guides. The diagnosis of childhood cancer threatens our ability to protect our children from disaster and forces us to turn part of our childs care over to medical professionals, who we may not have previously met or depended upon. We nevertheless must continue to be active protectors of our childrens welfare. We must advocate for ourselves and our children with the medical care system and the larger society. The information included in this chapter will help you in these efforts.
Advocating for ourselves as parents

In order to continue in our role as parents, we must be prepared to play an active role in the care of our child. Even though we may lack medical expertise, we have important information about our child that the medical system needs. For instance, we as parents know about our childs emotional and social naturehow she/he reacts to strangers, whether she/he likes to be held when in pain, how she/he feels about being naked or almost naked, food preferences, and so on. This information can be very useful to the medical staff when they are providing treatment, and it is the basis for a partnership between staff and parents. We also play an important role in being a constant presence for our child, even as care is being provided by others.
useless when the professional staffboth medical and social fails to include them in the provision of care. (These issues are discussed in more detail in Chapter 25.) Mutual support groups can help parents deal with these issues by educating parents about their rights and about the styles and habits of various staff members. The group is also a valuable source of information about the best way to approach staff members with particular concerns. In addition, groups provide parents with opportunities to address their concerns directly, by inviting members of the medical staff to their meetings. In Box 12 we provide several examples of situations that parents report have arisen in their relationships with the professional staff, situations that parents feel required them to act on their own or other childrens behalf. These can be used as discussion starters in your mutual support group meeting.
Box 12. Discussion Starters: What Would You Do If . . . ?

1. You are sitting across the hospital room from your five-year-old child. It is necessary for a new IV line to be started. The young intern obviously is having difficulty finding the small childs vein; he has missed the stick three times and is beginning to perspire nervously. 2. You and your nine-year-old child have been sitting in the clinic waiting room for two hours. It is now your turn to see the physician and staff. After a brief examination the physician indicates that she wants to do a bone marrow aspiration and asks your child to walk to the laboratory. Your child begins to cry and the physician says, Cmon now, it wont be bad, youve had this before. 3. Your teenage daughter has just been diagnosed with osteogenic sarcoma. The physician tells you that they know how to cure this illness and that an amputation and subsequent chemotherapy is the standard treatment. He asks for your permission to place your daughter on a research protocol. You ask whether there is information about the research programs results. The physician tells you that there is not much available in lay language and that it is all pretty technical, but he will answer any of your questions.
Continued
Advocating for our child

Many parents of children with cancer have had the experience of seeing things happen to their child that should not happen. In addition to the cancer itselfwhich should not happen to anyonesometimes mistakes are made in the hospital, perhaps too much teasing of our balding child is going on in the classroom, maybe friends no longer come by to play, maybe she/he cannot get a job. We must be able to advocate for the best life and care our child can getmedically, educationally, and socially. It is hard to advocate in some circumstances, hard to push and maybe even risk making a pest of ourselves. But we must. Parent groups can help because they push with the power of many parents, not just the power of one of us. In groups many parents can get together and discuss these problems and decide what to do about them.
Advocating with the medical system

The vast majority of parents are very satisfied with the medical care their child receives, but at the same time many parents express a variety of concerns about their dealings with the medical system. Parents report that they dont get enough information about their childs condition, nor do they get enough information delivered in a straightforward manner. They also report feeling
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Box 12. Discussion Starters: What Would You Do If . . . ? Continued

4. A social worker and a nurse meet regularly with your parent group. Recently, several group members have expressed a desire to discuss some problems they have been having with the radiation therapy section of the hospital. The parents have experienced rude and hurtful, although probably unintentional, comments directed at their children. The nurse and social worker seem uncomfortable with this topic and have tried to steer conversation away from it on prior occasions. They suggested that the radiation staff was probably doing the best it could, since they were having some staff problems, and that it probably would be fruitless and maybe hurtful to discuss this topic any further when there were plenty of other issues on the minds of many parents. 5. Your parent group feels that a parent who can represent your groups desires and concerns should be a regular member at clinic staff meetings. Then that person can act as liaison both wayswith the staff and with parents. You have heard of similar parent consultant or parent representative programs at other hospitals and want to adopt it at your institution.
Advocating with the broader society

Children with cancer and their family members sometimes experience discrimination in access to equal education, special educational services, and equal employment opportunities, and the access to or retention of health and life insurance. A number of parents have used Ombudsperson services through referrals by the national office of the Candlelighters Childhood Cancer Foundation to secure their childrens rights to education, employment, and insurance. Others have worked with local and national Candlelighters groups and personnel to develop information campaigns and programs to educate public officials and convince employers and insurers of the need to serve our children and families. In the pages that follow we provide guidelines for advocating for more public attention to childhood cancer, more funds for the treatment of ill children, and changes in public policies that affect our childrens welfare. For instance, the Candlelighters Childhood Cancer Foundation joined with many other organizations to support the National Coalition for Cancer Survivorships call for a march to promote a real war on cancer in the fall of 1998. Your local group can be an effective part of broader efforts like this one. Some local parent groups have also become involved in efforts to lobby government officials directly. Successful lobbying requires a clear understanding of the problem, factual evidence to support your position, and a clear statement of the changes you seek. Successful lobbying also requires that you find out which level of government has jurisdiction over the issue. Is it the local government, the state government, or the federal government? Who are the influential decision-makers at that level of government? The answers to these questions will tell you who the primary targets of the groups lobbying efforts should be. Some typical targets include: Legislative representatives. If you dont know the names of your representatives, look them up in the government pages of the phone book or call the League of Women Voters. Other influential lawmakers. These include lawmakers who sit on the committees and subcommittees that oversee your issue. They may also include lawmakers in the majority political party or those who have served many years in office. Administration officials. These may include officials in the Food and Drug Administration, the Labor Department, or the National Institutes of Health. The President of the United States. The group can register its views on the White House Opinion Line by calling (202) 4561111.
Source: Action Against Cancer, 1996, p. 27.
The kinds of problems described above often arise, despite everyones best intentions, and new possibilities can come up at any time. If problems can be discussed with staff members, in an open and trusting atmosphere, the odds of their being solved successfully increase greatly. Likewise, ideas for improving various situations are more likely to be enacted under these conditions. But if increased communication does not bring about cooperative problem-solving, parents and their allies will have to consider other advocacy tactics, such as bringing pressure to bear on the hospital or clinic staff. The wisdom and support of other parents, and the strength of allies in the parent group, can help us think through how best to approach solving such problems. Some of these and other problems require additional resources in terms of staff time and facilities. The help of other local parent groups, such as ones formed around pediatric heart conditions, cystic fibrosis, sickle cell anemia, and so on, is essential, for they also advocate for the welfare of children and families when they provide additional resources to the medical system in the form of volunteer time and energy and even funds.
The best times to contact your representatives are when a bill is: in committee before the House of Representatives before the Senate
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in a conference committee because one house does not agree with an amendment offered by the other house waiting for the governors or the presidents signature
make a personal visit. The guidelines in Box 13 were developed by the Center for the Advancement of Health to help you make your communication as effective as possible (Action Against Cancer, 1996, pp. 28-31).
The group has several options in terms of how it decides to contact the targets of its lobbying efforts: you can write, call, or
Box 13. Contacting Legislators

Writing to Legislators
1. Type your letter or write legibly and include your return address on both the letter and the envelope. 2. Make your letter no longer than one page and focus on one topic. 3. Be polite and never write in a threatening tone. 4. Identify yourself and use letterhead for the organization, if you have it. If you are writing on behalf of an organization, make that affiliation clear. 5. State your purpose in the first paragraph and specify the action you want the member to take. 6. If youre writing about a specific piece of legislation, refer to the bills number and its name or topic. If you dont know a federal bill number, but know the sponsor, call the sponsors office or the Legislative Information Service at (202) 225-1772. 7. Give reasons why the legislator should support your position. Explain how the legislation affects you, your family, or your community. If you have data to support your point, use it. If you can illustrate your case with personal examples, even better. Feel free to enclose relevant news clippings. 8. Ask directly whether the member will support your position and ask for a response to your letter. 9. Thank the member for his or her cooperation. 10. If youre writing about a particular bill, send a copy of your letter to the bills sponsor and to any cancer advocacy organization with which you are affiliated. 11. If the member eventually supports your position, follow up with a note of appreciation. 12. If you are writing to a member of the U.S. Congress, heres how you should address your letter: The Honorable (Senators name) U.S. Senate Washington, D.C. 20510 The Honorable (Representatives name) U.S. House of Representatives Washington, D.C. 20515
Telephoning Legislators
1. To call a U.S. Senator, dial (202) 224-3121. To call a member of the House of Representatives, dial (202) 2253121. 2. Save your phone calls for really important moments, such as urging a legislator to adopt your position just before a critical vote. 3. Ask to speak with the staff person responsible for the issue. If you cant reach that person, ask to leave a message with the person who answered the phone. 4. Keep your call brief. 5. Give your name and say you are a constituent. 6. Be specific about what you want the lawmaker to do. 7. Ask what the legislators position is on the issue youre calling about.
Visiting Legislators
1. Decide what you want to achieve from your visit. 2. Try to organize three to five people to visit with you. Brief everyone on the issues. Select a spokesperson to facilitate the meeting. Agree on the points you want to make and wholl make them. Rehearse responses to tough questions. 3. Prioritize your goals so you know where and when you can compromise. 4. Call the legislators district office and ask for the appointment secretary. Identify yourself as a constituent and say you and specified others wish to meet with the legislator to discuss your issue. 5. Dress in business clothes for the visit. Be prompt and patient. Your meeting may start late or be interrupted. 6. You may end up meeting with a staff person instead of the legislator. Dont be disappointed. Sometimes this can work to your advantage. Senior staff can be extremely helpful and influential. 7. If youre nervous, remember that legislators are elected to represent you. They need to know your position and the impact of legislation on your life. 8. Introduce yourself and your colleagues. Thank the person for agreeing to meet with you and for any past support on issues you care about. 9. Introduce your issue and stay focused on it. Outline your
Continued
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Box 13. Contacting Legislators

Continued
10.
11. 12. 13. 14. 15.
key points and illustrate them as succinctly and persuasively as you can. Explain how the legislation affects you and other constituents, emphasizing stories of personal impact. Be polite and as friendly and gracious as possible. Be reasonable and flexible, not argumentative or confrontational. Try to answer any questions youre asked. If you cant answer, offer to send information later. Ask for a commitment or response on the issue. Thank the person for his or her time and courtesy. Leave behind a fact sheet. Follow up the meeting with a letter of thanks that outlines the points you covered, areas of agreement, and next steps. Enclose any materials you promised to send.
Additional Ways to Contact Your Legislator

1. Send him or her copies of the groups publications and clippings from newspaper articles that mention the group. Invite the legislator to attend one of the groups activities. Find out when they plan to be in the district and write a letter of invitation well in advance. Follow up with calls to the district office. Invite the legislator to speak at public meetings organized by your group.
2.
3.
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Chapter 11: Special Projects
his chapter will introduce you to two of the special projects that parent groups have developed to help parents cope with the challenges of childhood cancer: parent consultant programs and oncology camps.
Social challenges. Because of their shared experience, parent consultants can reassure parents that they are not alone in their struggle and because of their connection with the Candlelighters group, they can introduce families to other parents who have children with cancer. Spiritual challenges. As parents who have struggled with the existential questions that accompany a cancer diagnosis, parent consultants are in a unique position to help families find meaning in their experiences.
Parent consultant programs

Parent consultant programs are another way your group can help families meet the challenges of having a child with cancer. Parent consultants use their personal experience as the parents of a child with cancer to help other families struggling with cancer and to educate treatment center staff about families responses to having a child with cancer. A parent consultant program is a wonderful example of what can happen when parent groups and professionals cooperate! A parent consultant is a parent of a child with cancer who is officially designated to be available to families. He or she contacts families shortly after the childs diagnosis and continues to meet with families whether the child is in the hospital or treatment center, at home, off treatment, going through a relapse, or struggling with the late effects of treatment. Parent consultants are available whether parents are mourning their childs death or celebrating their childs cure. And at every step, they use their experiential wisdom to help families meet the challenges of childhood cancer. Parent consultants help parents with: Informational needs by providing families with information about hospital routines, professional staff members, childhood cancer, and available treatment options; being available to answer questions; encouraging parents to ask professional staff members questions and get the information they need; and by providing them with information about the local Candlelighters group and its activities and resources. Emotional challenges of having a child with cancer by reassuring parents that their feelings are normal; helping them get through the shock of diagnosis; reminding them that they are not alone; making themselves available during bereavement; and facilitating Candlelighters support meetings. Practical needs by providing them with meal passes, parking validation, and/or grocery gift certificates; helping them access resources from Candlelighters, the hospital, and other cancer organizations; acting as a liaison between the family and the childs teachers; explaining the roles of various professional staff members; assisting with funeral arrangements; representing parent concerns at staff meetings; advocating for families; and by assisting them with bills, paper work, and insurance claims.
A parent consultant also interacts regularly with the professional staff. As the official liaison between families and the hospital, parent consultants are able to advocate for families and educate professionals about what childhood cancer is like from a familys perspective. As advocates, parent consultants play an important role in making sure physicians address families specific questions. Because parent consultants have insider knowledge about being the parent of a child with cancer and more time than the physician to spend with families, they are often asked questions that parents forgot or thought too trivial to ask the doctor. Sharing these questions with staff members enables the staff to communicate with families more effectively. Parent consultants can act as educators by making presentations at staff meetings and attending professional conferences in order to represent the needs and concerns of families of children with cancer. Providing professionals with this type of education is the first step in making the medical system more responsive to the needs of families of children with cancer. Selecting parent consultants. A parent consultant should be a good listener, and he or she should be knowledgeable about childhood cancer, community resources, and the hospital routines and staff. Parent consultants should also have some perspective on their familys experience with childhood cancer. Some programs require parents to wait until their child has been off treatment for at least one year or until they are at least one year away from their childs death to serve as parent consultants. Starting and funding a parent consultant program. A parent consultant program can take many forms that vary in terms of whether the parent consultant program is paid or voluntary, whether the funds come from the parent group or the hospital, and how frequently the parent consultant interacts with the professional staff. In some groups, the parent consultant program is funded by the parent group, and the parent consultant is accountable to the group. The parent consultant may also work for the group as a volunteer. In other parent consultant programs, the parent consultant is elected by the parent group to become a paid member of the professional staff. This kind of arrangement can lead to confusion about whether the parent consultant is
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ultimately accountable to the parent group or to the hospital. If this option is available to your group, take some time to discuss this accountability issue. It will minimize the potential for future misunderstandings. If your group will be funding its own program, make sure you have the support of the professional staff before you begin. Their cooperation and interest in the program is critical for its success.
is a chance to feel like a kid again. For siblings, camp is a chance to find out that there are others who understand what its like to be the brother or sister of a child with cancer. Camp offers parents a chance to relax with others who know what theyre going through. Oncology camps are an important part of helping the whole family meet the emotional and social challenges of childhood cancer. Box 14 tells about a wonderful weekend at camp.
Oncology camps
Oncology camps have something for everyone! They are an escape from the hospital and an opportunity for each member of the family to feel normal again. For children with cancer, camp
Box 14. Our Camp Experience

Our first weekend at camp opened our eyes to the often forgotten fact that there really were other parents and kids coping with cancer. Our feeling of being alone in this battle quickly left us as we began to talk with other parents. No one dwelled on their problems, yet we all shared experiences about treatments, the successes of taking Prednisone and other not-so-tasteful medicines. We talked about our children, our jobs, the weather, and sports and spent quality time just getting to know each other. You see, during all this time we spent with other parents, our daughter was being attended to by two or more counselors whose primary goal was to help her do all of the things that children enjoy. These fun things include canoeing, swimming, softball, crafts, and horseback riding. The friendships that have developed between our daughter and her counselors are a joy to witness. These young men and women all have their own special reasons for wanting to give of their time and efforts to make Camp Smile-A-Mile fun for the campers, worry-free for the parents, and an overall success. All camps were also staffed by dedicated nurses giving up the comforts of home to be on hand to administer medicines and first aid as needed. On the last day of each camp, we attend a Candlelighters meeting. The experiences shared in this support group have brought us all a little closer. We share fears and tears and learn from one another ways in which we all can better cope with the ups and downs of cancer. Camp Smile-A-Mile has certainly been a bright spot for our family. Our daughter has made friendships that will last a lifetime. The emotional support that weve received as parents will also never be forgotten. If your family hasnt been to camp, both you and your child are really missing the boat!
Source: Camp Smile-a-Mile.
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The benefits of camp indeed last a lifetime. Camp offers children with cancer the chance to: relax away from the worry and sickness of the treatment center share new experiences with others who understand what theyve been through learn new skills form life-long friendships enjoy fresh air and exercise be treated as a person instead of a patient gain confidence and self-esteem become more independent and self-reliant learn cooperation and teamwork HAVE FUN!!! There is at least one oncology camp in almost every state. Each camp provides some type of camping experience to children with cancer, but every camp is different. Some camps only offer one week of camp to kids who are currently on treatment, while others offer year-round programs for the entire family. Camps may also offer family weekend sessions, special siblings programs, and teen activities. To find out more about the camp(s) near you, call the Childrens Oncology Camping Association (COCA) at 1-800737-2667 or the Candlelighters national office at 1-800-366-2223. You should also check with the staff at the clinic or treatment center near you. Many times they have information about the camps, and they may even have a photo album of camp pictures. For specific information about a particular camp, call the camps director. Ask him or her: what medical support is available at camp (Is there a doctor or nurse at camp twenty-four hours a day? Can children receive chemotherapy at camp?) how far the camp site is from the treatment center and is an emergency transportation system available (e.g., airlift) if there is a registration fee how much camp costs if transportation is offered how the counselors are chosen and what kind of training they receive if they do a background/fingerprint check on all of the camp staff what the camper/counselor ratio is what activities are offered what the schedule is for a typical day at camp how many camp programs you can participate in during a year if the camp has been certified by the American Camping Association or is affiliated with any professional groups or organizations if you can have the names and phone numbers of several families who have participated in their program (These families are a great source of information!)
If there is not an established camp in your area, talk with the professional staff at your hospital or treatment center about starting one. You will need their support and their commitment to provide medical support for the camp. You may also be interested in joining COCA. As a member of COCA, you will have the opportunity to network with fellow oncology camps, to share ideas, and to participate in training workshops. You will also receive a newsletter three times a year with articles about whats new in oncology camping, and your camp will be listed in the COCA directory of oncology camps. For more information about starting an oncology camp, contact COCA for their brochure on How to Start an Oncology Camp.
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Chapter 12: First Steps

rganizing a mutual support group for parents of children with cancer takes a lot of time, energy, and commitment, but there are people and organizations who can help you. The information in this chapter will help you find out who those potential sources of assistance are. It will also help you gather the information you need to decide what kind of parent group is needed in your community and which of the activities described in Part II this group will focus on.
Investigating
The first step in forming a parent group for families of children with cancer is to do some investigating. The purpose of the investigation is to learn more about your communitys existing services for families of children with cancer. You may discover that the parent group youre looking for already exists. You may also find the leader of a past parent support group who is willing to help you start a new group. On the other hand, you may learn that your community has no services for families of children with cancer. In this case, your community is lucky to have you! Heres a list of ways to begin your investigation: 1. Check your local newspaper for a list of support groups. Many newspapers include this list in the community section. 2. Talk to the social service department at the hospital 3. Call the self-help clearinghouse in your area 4. Look in the yellow pages of the phone book under Social Service Organizations 5. Look in the white pages under Cancer 6. Call the national office of Candlelighters Childhood Cancer Foundation at 1-800-366-2223 (CCCF) 7. Contact the local division of the American Cancer Society 8. Call the Leukemia Society of America at 1-800-955-4LSA 9. Contact Cancer Care, Inc., at 1-800-813-HOPE 10. Call the National Coalition for Cancer Survivorship at 1-301650-8868 11. Ask the staff at the treatment center about any past parent support groups. Taking advantage of the groundwork laid by a previous parent group could save you a lot of time and energy. For more information, see the examples in Chapter 22. Each of the ideas on this list will assist you in your investigaYou Are Not Alone
tion, but the most valuable place to begin is with the national office of the Candlelighters Childhood Cancer Foundation. They will be able to provide you with a directory of every parent group in the country, and they are eager to help those who are interested in starting new groups. Once you have a list of the groups and organizations in your area, contact them and ask for specific information about their programs and services. Then ask yourself the following questions about each organization: Do the programs and services of this organization meet the informational, emotional, social, spiritual, and practical needs of families of children with cancer? If not, which needs are not being addressed? Who does this organization serve? (just patients, just parents, only those with a specific diagnosis?) Who is being left out? Is this organization willing to incorporate my ideas?
The answers to these questions will help you evaluate the need for a new parent group. They will also help you identify any gaps in the existing services. Make a list of these gaps and use them to help you make decisions about your groups activities.
Finding people to help you

Now that you know your group will not be duplicating the efforts of another organization, its time to find two or three people who share your interest in starting (or reviving) a mutual support group for families of children with cancer. Well call these people the core group. The members of the core group will help you get started. Theyll help you make decisions about when and where the group should meet, theyll assist you in recruiting parents to join the group, and theyll help you regain your energy and enthusiasm when you come face to face with your first setbacks. The core group will also show new members that a mutual support group is not just one or two people but a real mutual effort. Members of the core group should have different skills and training. The variety will make the group attractive to a diverse group of parents, and it will make it easier to accomplish the variety of tasks involved in starting a group. Members of the core group also need to be energetic, dependable, and capable of sparking the interest and involvement of other people. The following individuals would be welcome members: other parents of children with cancer who share your concerns and have sufficient time and energy available health professionals who are sensitive to the needs of families of children with cancer and are willing to assist you in your efforts. Their access to resources and their ability to
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help the group with referrals are valuable assets for a core group. Talking to people is probably the most effective way to recruit potential members of the core group. Your enthusiasm is contagious! Talk to parents in clinic waiting rooms; talk to the people you meet at oncology conferences; talk to the staff at the treatment centers and ask them to suggest people they think might be interested. Tell these people about your ideas for the group and what you hope it will accomplish. Its not as hard as you think. It may be as easy as sharing coffee and cookies with another interested parent. Give those who express an interest in becoming members of the core group an explanation of what they can expect, as best you can. Let them know that not everyone has to commit a lot of time and energya couple of hours a month may be enough. If people turn you down, dont get discouraged. Just keep talking! If someone you talk to isnt prepared for the responsibility of being a member of the core group, now is the time to find out.
As the leader of the first few meetings, your job is: to make sure that the meeting begins and ends on time to keep the meeting focused to clarify and review the purpose of the core group to encourage the participation of all group members to help members see their shared interests to encourage members to share their ideas with one another If youre feeling a little nervous about facilitating a group discussion, take a look at the suggestions regarding group discussions in Chapter 19. Ask everyone to introduce themselves and take turns sharing information about their childs and their familys situation. If people are reluctant to talk, feel free to jump in and get things started by going first. As people start to feel more comfortable with one another, invite them to share the reasons for their interest in the core group. You can also ask members to talk about their concerns regarding childhood cancer and their ideas about how the group can address these issues. Write everyones concerns down on a large sheet of paper. This list will help all of you see what you have in common and will give you some ideas about the kinds of activities the group can pursue. Leave time at the end of the meeting to make plans for the next meeting and for people to exchange their phone numbers and addresses. It is also important to ask everyone to share their reactions to the meeting. What did they find most helpful, and what would they like to do differently next time? Use this feedback to guide the planning of the next meeting.
Meeting with the core group

Now that you know who the members of the core group are going to be, its time for all of you to meet and get started. Find out when and where others prefer to meet. Meeting at a time and place that is convenient for everyone will let members know that they are all valued members of this team. Try to find a place where you will all be comfortable and where you are unlikely to be disturbed. You can use the checklist in Box 15 to help you make sure that everything is ready for the first meeting.
Making plans
The focus of the next core group meetings will be on establishing and clarifying the groups goals and purpose. During these meetings, you will begin to address some of the following questions. Who is this group for? just parents? the whole family? friends? professionals? Should members be asked to pay dues? What are the responsibilities of group membership? How will we address the growth of the group? What kind of leadership will we have? When and how will leaders be chosen? When and where will meetings be held? What will we do at meetings? What kind of role will members of the professional community play in the group? Will they refer new members? Will they be available for consultation and technical assistance? What role should they play in the leadership of our group? Will we seek tax-exempt status and a formal organizational structure? How will we make decisions? How will we handle conflict? How will we act to ensure our members confidentiality? What kinds of programs and services should we offer?
Box 15. Checklist for Meeting

Check off when completed __ 1. Members have been notified of the meetings date, time, and place.
__ 2. Members have been consulted to be sure that they have transportation and are able to come to the meeting. __ 3. Room has been arranged for the meeting. __ 4. Snacks have been prepared.
__ 5. Needed materials are available (paper, markers, tape, cups, etc.). __ 6. Blank list for people to write their addresses and phone numbers on is available.
Source: Adapted from Crowfoot et al., 1982, p 34.
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Answering these questions will take a lot of discussion and more information. Some of this information is in Chapters 14-18, but to get the rest of the information youll need, your group needs to do some more investigating.
Investigating, part II: What do parents want?

The purpose of this second investigation is to learn more about what other parents of children with cancer want. Members of the professional community usually refer to this type of investigation as a needs assessment. A needs assessment serves two important purposes. Organization: Your needs assessment will help you clarify your groups purpose. It will also help you make decisions about your groups structure and the kind of programs and activities your group will offer. Validation: Conducting a needs assessment is a critical step in legitimizing the group and in mobilizing the support of professionals and potential donors. Their help will come only after you demonstrate that a group is necessary. There are many ways to approach a needs assessment, some of which are more formal than others. Group leaders usually prefer more informal approaches to investigating parents concerns. For example, you may wish to do a telephone survey of the parents of children with cancer in your area. The survey in Box 16 might include a few simple questions.
You could also use the needs assessment questionnaire in Pullout 3. The items on this questionnaire have been grouped according to the five stresses of childhood cancer that were described in Chapter 2. As you go through the completed questionnaires, make note of the areas in which many parents seem to be struggling. Focus on these areas as you plan your groups activities. The table at the beginning of Part II will help you determine which activities are most effective in meeting particular stresses. For more information on needs assessments, contact the national CCCF office Regardless of how your group decides to do its needs assessment, it is a good idea to include members of the professional community (doctors, nurses, social workers, child life workers, and so on). Because these professionals have had the opportunity to meet with many families of children with cancer, they can help you identify common areas of concern. Professionals may also suggest ways their institutions can help. Some group leaders have also found that professionals are more likely to help with the groups ideas if they were involved in developing them. Once you know what kind of group you are interested in forming, the core group will be ready to take the steps needed to form the parent group. We will discuss these steps in the next chapter.
Box 16. What Do Parents Want From a Support Group?

1. What do you want to know about the treatment and prognosis of different kinds of childhood cancer? 2. What questions do you have about schooling issues? 3. Do you want more information about nutritional supplements? 4. Do you want to talk with other parents whose child has the same diagnosis as your child? What would you ask them? 5. Would you like some help working with your insurance company? 6. Would you like some assistance in meeting your bills? 7. Do you want to know where to get help in enabling your child with cancer to live a (relatively) normal life? 8. Would you like more information about dealing with siblings reactions and/or marital stress? 9. Are you interested in learning more about late-effects of treatment? 10. Would you like more information about disciplining the child with cancer and maintaining good family communication? 11. Are you concerned about employment issues for yourself?
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Pullout 3. Needs Assessment Questionnaire Form

Directions:
Read each item carefully Put an X in the Yes box if you would like help with that item
Needs EMOTIONAL NEEDS I am interested in . . . 1. Tips for dealing with stress 2. Time to talk with other parents of children with cancer 3. Ways my family can support each other during hard times 4. Learning how to make time for myself INFORMATIONAL NEEDS I would like more information about . . . 1. My childs medical condition 2. My childs special needs 3. Therapies and services my child is getting now 4. Other therapies that might help my child 5. Possible late effects of my childs treatment 6. My childs educational needs and other schooling issues 7. My childs nutritional needs and nutritional supplements 8. How to play and talk with my child at this time 9. How to discipline my child at this time 10. How to talk about my child with doctors and nurses/How to ask them for the help we need 11. Other programs and services that are available for my family 12. Accessing a library of resources 13. Maps/directions for clinics, doctor visits, the hospital, etc. Y N Comments or Suggestions
Put an X in the No box if you feel you already have what you need You can state your specific suggestions in the Comments box
Needs Comments or Suggestions
Y N
PRACTICAL NEEDS I am interested in more information about . . . 1. Services and resources at the hospital 2. Ways to share the responsibility of caring for my child with my partner 3. Working with our insurance company 4. Paying my bills 5. Getting time off from work 6. Getting legal advice SOCIAL NEEDS I would like more help with . . . 1. Dealing with marital stress 2. Understanding my other childrens reactions and needs 3. Talking about my childs cancer with my parents, friends, and other relatives 4. Meeting new people 5. Ways for my family to enjoy time togethersocial and recreational events 6. Finding a local oncology camp SPIRITUAL NEEDS I am also interested in . . . 1. Learning what my childs cancer will mean to our family 2. Talking about how I now feel about G-d 3. Learning how people deal with the future OUTREACH NEEDS I am also interested in . . . 1. Educating the general public about childhood cancer 2. Making changes in the medical system
Y N
Y N
Y N
Y N
Source: Adapted from Candlelighters Canada Parent Support Group Resource Manual, n.d., pp. 148-50.
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Chapter 13: Forming the Group

ow that the core group has met and collected some information about what kind of parent group is needed in your community, you are ready to begin inviting other parents to participate. This chapter will get you started. We will discuss the process involved in naming the group and establishing its mission, talk about the steps involved in recruiting new members for the group, and discuss some of what is involved in preparing for the groups first meeting.
Establishing the groups mission

Depending on how formal your group is, writing a mission statement may be an important step in letting people know who you are. Your groups mission statement can take the information collected during the needs assessment and use it to define the groups goals and its reasons for existence. (Less formal groups may not find a mission statement to be important.) An effective mission statement answers the following questions: What is the purpose of this group? What do we hope to accomplish? Who do we serve? What do we offer them? To help you get a better sense for how your group might answer these questions, here are the mission statements of some other Candlelighters groups. Candlelighters of Brevard, Inc., is dedicated to meeting the needs of children with cancer and their families by offering them educational, emotional, and financial support. Candlelighters Childhood Cancer Family Alliance is a charitable organization providing emotional, educational, and practical assistance to children with cancer and their families in thirteen counties of the greater Houston area. The mission of the Rocky Mountain Chapter of Candlelighters Childhood Cancer Foundation is to understand the special challenges of families with children who have cancer, are in remission from cancer, are long-term survivors of cancer, or who have been lost to cancer. We stand for education, support, service, and unparalleled medical and emotional care for these families.
Choosing the groups name

Choosing a name for yourselves is an important step in starting a group for parents of children with cancer. The following guidelines will help the core group as it begins this fun and challenging process. Your groups name should tell someone who hears or reads it a little bit about what your group does and who its for. Your groups name should not be easily confused with something else, for example, the McDonald Group may be confused with the fast food chain. Your name should be catchy. If dont think you can be objective about this, feel free to ask other people in the community for their opinion of your groups name. Your groups name should take advantage of the credibility and respect associated with the Candlelighters Childhood Cancer Foundation. Including the Candlelighters name in your own will make it easier for others to recognize your group.
Here are some examples of local groups names: Candlelighters for Childhood Cancer of Southern Nevada Inland Empire Chapter of Candlelighters (San Bernardino, California) Washington State Candlelighters Childrens United Research Effort CURE (Rochester, N.Y.)
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Recruiting new members

To be successful in recruiting new members, groups need to make contact with lay persons and professionals who are in a position to recommend the group to interested parents. These recommendations are usually called referrals. Some of the people who are most likely to refer parents to your group are listed in Box 17.
Pullout 4. Sample Letter for Making Contact with Source of Referrals

This Pullout is available in Appendix C for reference. (Address) (Date) Dear (Name), Allow us to introduce ourselves. We are the Hometown Candlelighters, a parent group for families of children with cancer. Because of our experiences, we have some understanding of the challenges that parents face when one of their children is diagnosed with cancer. For this reason, we want to be available to other parents who are struggling with the social, emotional, practical, informational, and spiritual challenges of being the parent of a child with cancer. We hope that you will join us in our effort to help families of children with cancer by passing out the attached brochures to parents who may be interested in talking with another parent whose child has cancer. If you would like further information about our group or more brochures, please call the Hometown Candlelighters office at (telephone number). Sincerely, (Name) Hometown Candlelighters
Source: Adapted from Nathanson, 1986, p. 53.
Box 17. Potential Sources of Referrals

Members of the inpatient and outpatient staff at your local treatment center or clinic (physicians, social workers, nurses, chaplains, therapists, and child life workers) General pediatricians and family practitioners, including HMO pediatricians and pediatric discharge nurses Pharmacists Local chapters of professional organizations involved with childhood cancer, e.g. the American Society of Pediatric Hematology/Oncology, the Association of Pediatric Oncology Nurses, or the Association of Pediatric Oncology Social Workers Teachers, counselors, nurses, and principals at both public and private schools Other organizations concerned with childhood cancer. For a list of these, please see Appendix A. Local parent groups for other childhood conditions. These groups may by contacted by parents who are seeking a support group for families of children with cancer Local chapters of organizations concerned with the health care of children, e.g. the Association for the Care of Childrens Health Emotional support organizations, mental health centers, and hotlines. Parents who need your groups support may contact these organizations. City and state public health departments Public information sources, e.g. newspapers, television and radio stations, self-help clearinghouses, public libraries, and community centers.
When making your initial contact with these sources of referrals, it is best to contact them in person or by phone. This will give you an opportunity to explain your group, answer questions, and make sure that you have found the appropriate contact person in each organization. If you are unable to speak with your contact in person or by phone, send him or her a letter like the example in Pullout 4.
Whether you write a letter, make a phone call, or meet with your contacts in person, you should provide them with information about the group. Tell your contacts who the groups members are, what kinds of services the group will offer, and when and where the groups meetings will be. Also be sure you provide your contacts with the name, phone number, and address of a group representative. This will allow them to keep you posted about the referrals they have made and to ask any further questions about the group. It is a good idea to keep a file of all the people you have contacted about referring parents to your group. Make an information card for each person and include the information from Box 18.
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Box 18. Sample File Card for Referral Contacts

Name of the institution or agency: _______________ Name and position of the contact person: __________ Address:_________________________________ Phone number: ____________________________ Date of contact:____________________________ Means of contact: letter phone meeting Results: _________________________________ ______________________________________ ______________________________________
Source: Nathanson, 1986, p. 51.
time or energy to attend regular meetings or to involve themselves actively in the group at first, but it will help them to know that someone cares about their family and that support is available for them when they are ready for it. Something magic happens when a parent whose child has been newly diagnosed hears a veteran parent say, My child has cancer too, and I know something about what you are going through (Chesler and Chesney, p. 341). Words like these tell a frightened parent that he or she is not alone, and they offer proof that it is possible to survive their childs diagnosis.
Talking to potential group members

Before you say anything to a potential group member, remind yourself that the best advertisement for the group is a good listener (Nathanson, p. 56). Listening carefully to a potential member will demonstrate that you care about him or her, and it will allow you to tailor your description of the group to that parents specific concerns (see Box 20).
It is also important to thank your contacts. As soon as possible, mail each contact person a thank-you note. You can use the example in Box 19 to get started.
Box 20. General Guidelines for Talking with Potential Group Members
Tell parents about what its like to be a member of the group. Tell them what the group does, who the other members are, where and how often you meet together, and a little bit about what happens at a typical group meeting. Emphasize the positive aspects of participation. Share some of the positive changes you have experienced as a result of your participation in the group. Parents time and energy are valuable, so give them some specific reasons to become involved with the group, e.g. access to information from peers and professionals, support and affirmation, the opportunity to learn new coping skills, a feeling of connection with others, the chance to find out if what theyre feeling is normal, and the chance to help other parents by making changes in the medical system. Offer the parent a ride to the first few meetings and arrange childcare for the meeting. Reassure parents about the nature of the groups discussions. Many parents fear that a group discussion will increase their anxiety, anger, sadness, and emotional distress. Let them know that there is usually more laughing than crying. Minimize the perception of the group as being all white, all middle class, all women, or all anything. Tell parents about your groups activities. Emphasize the variety of options and let them know how these activities can help them meet some of the specific challenges they are facing. Remember that everyone has their own coping strategies and that not everyone will choose to join your group.
Box 19. Sample Thank-You Note for Referral Contacts

(Address) (Date) Dear (Name), Thank you for meeting (talking) with me (us) about the Hometown Candlelighters support group for families of children with cancer. I was (we were) pleased to have this opportunity to share information with you and look forward to your cooperation in meeting the needs of families of children with cancer. Please feel free to contact us if you have any further questions about our group. You can write to us at (address) or you can all us at (phone number). Thank you again for your help! Sincerely, (Name)
Touch base with your contacts regularly. Plan to speak with them at least once a year. Remind them about the group and keep them up to date on its activities and services. They may not refer a parent now, but hopefully they will in the future. Timing of recruitment. Although most parents need some time to get over the initial shock of their childs diagnosis and to adjust to the demands of illness and treatment, groups should reach out to these parents as soon as possible. They may be too shocked and scared to do anything right away, or may not have the
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If you are contacting parents of newly diagnosed children, you should also be prepared to address some of the particular stresses and concerns that occur early on. You may wish to refer back to the list of stresses in Box 1 so that you can be especially alert to them. Parents struggle to accept their new situation. Understand that before parents of newly diagnosed children can envision themselves as part of a group, they need to wrestle with their childs diagnosis and the fact that what they thought could only happen to others has actually happened to them. They must acknowledge that the diagnosis is true and there will be no sudden miracle cure. They must also begin to overcome the shock, emotional paralysis, and exhaustion that often occur in the first week. Apprehension about meeting others. Before parents of newly diagnosed children can think about being part of a group, they may have to overcome fears that they might lose emotional control in front of others. Parents also may have concerns about becoming depressed and overwhelmed if they hear stories of other children who are not doing well. Learning to cope with the perceptions of others. Parents of newly diagnosed children may worry about how they look to others and what others will think of them. They may worry that family members, friends, neighbors, and treatment team members who offer assistance will be offended and view the parents membership in the group as a message that their assistance was not enough. Screening and interviewing potential members. In addition to providing an opportunity to tell parents about the group, having initial conversations with potential group members allows you to evaluate whether or not the group will be able to meet this particular parents needs. Mutual support groups are not for everyone, and not everyone who wants to talk with other parents feels comfortable doing so in a formal group setting. Thus, group membership is not recommended for individuals whose particular needs are very different from the goals and objectives of a specific group. Parent groups are also unlikely to be able to meet the needs of individuals who have substance abuse problems or who are suicidal, aggressive, paranoid, or extremely self-centered. To help these individuals meet their needs, groups should consider maintaining a referral list of other groups and organizations. Using these lists allows groups to help individual parents find more appropriate services.
their name, address, phone number, and childs diagnosis. This information can then be passed along to the group so that it can make arrangements for someone from the group to contact the new parent. Some of the advantages of such an arrangement are listed in Box 21.
Box 21. Benefits of Using a Release Form

all parents are notified about the group patients confidentiality is not violated, because their names are not made available to the group leaders unless/until they give permission encouragement from staff members adds to the groups credibility and legitimacy parents do not have to take the initiative to call the group
Working with the hospital staff to recruit new members

Members of the hospital staff can facilitate the recruiting process. Staff members can provide parent organizers with access to patient lists, and they can advertise the group to the parents of newly diagnosed children. In an ideal situation, staff members are willing to ask parents whose children have been newly diagnosed to sign a release of
Staff members can also present the group as an optional but highly recommended part of the total treatment plan. In this situation, staff members take the initiative to provide families with the time and location of group meetings and the name and phone number of a group representative. Staff members also play an important role in encouraging parents to attend the groups meetings. This situation benefits the group in many ways, but it is slightly less desirable than the situation described earlier, because it requires potential members to take the initiative to call the group at a time when they may feel that they do not have the energy to do anything extra. As valuable as staff support of recruiting efforts can be, it is not always easy to come by. Here are a few general guidelines to help you get things off to a good start (from Nathanson, 1986, p. 54). For more specific information about working with medical staff, please see Chapter 25. Be organized and do your homework. Know your groups purpose, and be prepared to tell professionals about how you plan to fulfill it. Assure staff members that the group is not taking over their jobs. Explain that the groups role is to offer the support of those who have been there and to provide an additional support to professional services. Assure staff members that, just as there are times when it is appropriate for them to refer parents to the group, there are also times when it will be appropriate for the group to refer its members for professional services. Make sure they understand that the group cannot and will not attempt to do their jobs.
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Working without staff support

Unfortunately, following the guidelines on the previous page does not guarantee a successful relationship with hospital staff. If your group does not have staff support, youll just have to be more creative in your efforts to make contact with families of newly diagnosed children. In fact, such creativity is a good idea even if you have a wonderful relationship with the hospital staff. You never know when things might change. Here are some examples from other Candlelighters groups: 205 In one hospital, a member of the parent group served as an informal liaison with the pediatric oncology staff. Although the staff did not provide this liaison person with the names and addresses of parents, she met many parents of newly diagnosed children when they came to clinic. At those times she served coffee and juice and cookies, talked with them, told them about the parent support group, and gave them a card with the groups contact numbers. She also organized a system where other group members who visited their own and other children who were hospitalized took the time to meet and talk with other parents of children with cancer during those ward visits. The hospital and clinic turned out to be good places in which to do low-key contacting and recruiting. A group in a large city hospital that was unable to obtain official access to a list of families created posters and leaflets announcing their groups existence and listing names and numbers of parents who could be contacted for information. The staff permitted group members to display these materials on the wards, and a stack of them was available in the clinic for parents to pick up and take with them. A group in Canada sponsors coffee in the clinic in an effort to make newly diagnosed parents aware of the group and to ease the burden of long waiting periods and loneliness in clinic waiting rooms.
A surprising number of connections come by word of mouth. The woman who walks by a group poster at a health fair in the mall may not have a child with cancer, but her neighbors nephew may be diagnosed in a few months and she may remember your group and make a referral. You never know!
Lets get together!

O.K. Youve got a name, youve got some ideas about your groups purpose, and now youve got some people who are interested in getting together. It sounds like youre ready to have your first group meeting! Before you can meet, make sure everyone knows about the meeting. Make a flyer and post it on the hospital bulletin boards, at schools, at churches, doctors offices, libraries, and anywhere else you think of. Just remember that you might need to get permission to hang your notice first. Put an announcement in your local newspapers listing of support groups. Ask your local self-help clearinghouse to mention your meeting on its information and referral line. Notify everyone in your contact file.
Getting your first meeting started on the right foot

Begin and end the meeting on time. Those who attend will appreciate your respect for their time and will feel more at ease knowing that your groups meetings arent going to take up all of their time. Provide refreshments. Theyll help create an informal atmosphere and make it easier for those who attend the meeting to socialize with one another. Welcome everyone and ask them to sign in with their name, address, and phone number. Keep in mind that people will be wondering what to expect and that they may be feeling nervous. Acknowledge their feelings and applaud their willingness to come. Tell people a little bit about what they can expect from the group and how the group is organized. Introduce yourself and the members of the core group and make sure that everyone knows when and where future meetings will be held. Give people a chance to introduce themselves and to share their experiences. This will help members discover what they have in common with one another and bring the group closer together. To get this process started, it helps if members of the core group volunteer to share their experiences first.
More recruiting strategies: Publicity is another way in which your group can find members. Get your group in the newspaper and on the radio and television. Then make sure you get a listing for your group in the telephone book, so that new parents and people in the community can follow up on any publicity that reaches them. (For specific information about publicizing your group, see Chapter 21.) Bring posters and brochures about the group to health fairs and other fundraising events. Remember and use your contact file. School personnel, clergy, and community library staff are often willing to cooperate in distributing group materials. Keep them up to date on your activities.
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Find out what your members needs and concerns are and listen to their ideas and suggestions. You may want to encourage people to express their needs at the end of the meeting. Evaluate the meeting. Before people leave, get their feedback on the meeting. What did they like about it? What would they like to change? To make it easier for the group to answer these questions, consider using the chart in Pullout 5. Your consideration of these issues will make the next meeting even better!
Box 22. Guidelines for Evaluation

1. Go around the group asking for thoughts, feelings, and impressions of the meeting. (Each member should have the right to pass if they do not wish to say anything.) If people seem uncomfortable about sharing their feelings verbally, you can ask members to write them on a sheet of paper. 2. Avoid getting into arguments about peoples impression of the meeting. It is not necessary for all members of the group to agree about what was positive and negative about the meeting. 3. Dont feel that you need to spend a lot of time on this process. It usually only takes a few minutes. 4. Try to end on a positive comment.
Source: Adapted from Crowfoot et al., 1982, pp. 42-43.
Pullout 5. Chart for Evaluating a Meeting

This Pullout is available in Appendix D for easy photocopying. Positive Features (things that people felt good about) Negative Features (things that could have been done better) Things to Change (Specific suggestions for improvement)
Parts of the Meeting
Agenda:
Participation:
Leaders role:
Tasks accomplished:
Peoples feelings:
Other: _____________
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Chapter 14: Embracing Diversity

eports from mutual support groups for families of children with cancer throughout the nation indicate that most of these groups are fairly homogeneous. The active members are, for the most part, female, white, and economically middle class. In contrast, the reality of childhood cancer affects families from all racial, economic, and religious backgrounds. And when parents from different backgrounds get together, they can learn much from others different cultural styles and approaches. This chapter looks at why self-help groups are so limited in their membership and what can we do to make them more welcoming.
forms of private transportation, and not everyone is willing to travel long distances to a single meeting place, especially if that meeting place does not seem like a comfortable and safe environment. Thus it may be important to hold some group sessions in local community centers, churches, or other neighborhood locations where people without the resources for transportation can more easily attend. Perhaps members can offer to pick up and drive other parents to a meeting, or perhaps the group can offer respite care or babysitting for these parents so that they can attend the groups meetings.
The separateness of our society

For the most part, our society is separated by race and economic class. People of different races and economic classes often live in different neighborhoods, their children go to different schools, they have different kinds of jobs, and they often live quite different lives. People with more wealth usually have many more choices about where they work and where they live. They also have more money to spend on schools, clothing, transportation, medicine, and health care. Unfortunately, its not easy to overcome the separateness in our society. As leaders of two different parent groups stated: In this town the different races are pretty separate. And the same thing goes on in this hospital and this group. I dont know why some of the really poor people dont join the group. Its hard for us to reach them and maybe theyre uncomfortable with usor maybe they dont have cars. But overcoming our habits of separateness is the only way we can truly serve the needs of all the people who are affected by childhood cancer. Thus we must find ways to make our parent groups more attractive and accessible to families from all walks of life.
Making meetings more attractive and effective

Once a more diverse group of parents attends meetings, the content of these meetings will also need to be responsive to the wide variety of needs and lifestyles that are present. Middle-class parents may be more accustomed to talking with professional staff members than are poorer parents. They may be more comfortable in these settings. It is important to ensure that these parents do not dominate meetings and take over discussions with professional staff members. It is important to make room for others to share their concerns as well. Moreover, some African-American and Latino parents may have experienced discrimination in the provision of medical care. That may make it even more difficult for them to engage in open and trusting conversations with professionals. The barriers of discrimination and inequality can also make it difficult for members of a diverse group to relate to and trust one another. Parents of color may find it difficult to relate comfortably with the largely white membership of mutual support groups. And in turn, white parents may find it uncomfortable or difficult to relate well with and be welcoming and accepting of the participation of people of color. When there are language differences among the parents in the group, interaction may be even more difficult. Some groups have invited bilingual aides to every group meeting, explicitly to increase members comfort and to make communication easier. One group, serving an area with many Spanish-speaking families, developed bilingual pamphlets and videos for parents. They also scheduled presentations at group meetings about different groups lifestyles and preferences, including information about festivals and holidays. We have discussed previously how mutual support groups must respond to the emotional information and practical needs faced by parents of children with cancer. And yet, depending on their situation and culture, parents are likely to prioritize these needs differently. Parents without financial security may need practical and financial assistance more than time and space to talk about their feelings. How can the group respond to these differences effectively?
Making meetings more visible and accessible

If you wish to appeal to and recruit people from a broad range of backgrounds, you might distribute announcements and meeting notices in the churches, neighborhood stores, and facilities that are located where people of varied races and classes live. The language of these announcements also may have to be designed to fit with the language and styles of different cultures and communities. Outreach to the agencies and organizations that serve minority as well as majority populations is also an effective strategy. Invite these agencies to pass on the information about groups for families of children with cancer to the people they work with. Not all parents have access to respite or child care and other
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Dealing directly with potential discrimination

If one of the central aspects of American life is that people of color and poorer people often face discrimination and exclusion, it will be important for local mutual support groups to be especially watchful for such events. They may occur around the provision of medical care, the availability or responsiveness of insurers, informal comments made by staff or other parents, access to social services, and so on. The anticipation of such situations, and rapid action to publicize and challenge them, will be an important barometer of how welcoming a group is of a diverse membership.
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Chapter 15: Deciding on the Nuts and Bolts
he information in this chapter will help the group decide when and where it should meet, how big it should be, who should be included in the group, and how formal the groups operating procedures should be. We think of these decisions as the nut and bolts of getting groups started. To make decisions that will meet the unique needs of your group and its members, you should be guided by your groups purpose and the information collected in the needs assessment. You may also find it helpful to ask potential group members to fill out a questionnaire like the one in Pullout 6. Unlike the questions asked in the needs assessment, these questions focus specifically on nuts and bolts issues.
Where will we meet?

Many groups decide to meet at the hospital or treatment center, because it is easy to find and provides easy access to the professional staff. Other groups prefer to meet elsewhere, because the hospital has so many associations with illness and treatment. Some alternatives include Ronald McDonald houses, churches and synagogues, community centers, members homes, library meeting rooms, restaurants, schools, and senior citizen centers. Other possibilities include getting space at the local YMCA/YWCA or from community service organizations such as the Kiwanis, Lions, or Rotary clubs.
As you consider these possibilities, remember the groups purpose. A smaller, more intimate setting is important for groups that plan to offer emotional support sessions. Groups that focus on advocacy and fundraising activities probably need an office-type setting where they will have access to computers, desks, telephones, and so on. Getting space from a community organization can help groups interested in raising public awareness to gain access to the general public. There are also a number of logistical factors to consider in evaluating potential meeting sites. The meeting site should be comfortable. Is there enough space for all members to fit comfortably? Are the chairs comfortable? What is the lighting like? Are the restrooms easily accessible? Is there a way for you to adjust the rooms temperature (windows, air conditioning, thermostat, etc.)? The meeting site should be easy to get to. Can members use public transportation to travel to meetings? Is the room or building easy to find? How far will members have to travel to get to the site? A special note to groups who serve families separated by large geographic distances: Consider the possibility of forming regional subgroups and meeting in more than one location.
Pullout 6. Group Meeting Questionnaire Form

This Pullout is available in Appendix D for easy photocopying. Name: _________________________________________ Date:________________________________________ Address: ___________________________________________________________________________________ Phone:_________________________________________ E-Mail: ______________________________________ 1. When would be the best time for you to attend group meetings? Time/Day Morning Afternoon Evening Monday Tuesday Wednesday Thursday Friday Saturday Sunday
2. Where would be the best place for you to attend support group meetings? Please check one: Hospital/Treatment Center Community Center Private Home Other (please specify)__________________________ 3. How far are you able to travel to attend meetings? _______ miles 4. Prefer to meet for: 1 hour 2 hours 3 hours 5. Would it be helpful to you if there was babysitting provided during the meetings? Yes No 6. Would it be helpful to you to join a car pool to get to and from meetings? Yes No
Source: Adapted from Candlelighters Canada Parent Support Group Resource Manual, n.d., p. 143. You Are Not Alone
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The meeting site should be inexpensive. Is there a fee for using the space? Is there enough inexpensive parking for members? Will members feel pressured to spend money? (This last item can be one of the disadvantages to meeting in a restaurant.) The meeting site should accommodate the specific needs of the group. Can you rearrange the chairs? If the group is having a sharing session, the chairs should be arranged in a circle, but for a guest speaker, the chairs should probably be arranged in a semicircle with the speakers chair in front. Is there enough room to break into small discussion groups? Is there a place to store group materials (newsletters, brochures, library materials, etc.)? Is there a place to prepare and serve refreshments? The meeting site should accommodate the specific needs of group members. Can child care be provided in a nearby room? Are the building and room accessible to people with disabilities? Is there enough privacy for members to feel comfortable sharing their feelings? The meeting site should be safe. Is it in a well-lit and well-trafficked area? The meeting site should be available consistently and should have a minimum number of distractions. (Remember that meetings held in members homes can be interrupted by noisy pets, telephones, etc.) Consider using the Meeting Site Checklist Form (Pullout 7) to help you compare possible meeting locations.
When will we meet, and how often should our meetings be?
Your groups meeting schedule should reflect its purpose and the needs of group members. Parents of children with cancer have many demands on their time, so before deciding on the groups meeting schedule, try to get some information about members schedules. To get this information, use the Membership Form (Pullout 6) or poll group members at your first meeting. When you find a time that is convenient for everyone, stick to it. A regular schedule will make it easier for members to plan their other activities around the group meetings. It will also help members who miss a meeting to avoid confusion about the time for the next meeting. If the group is unable to meet at a regular time, you may want to set up a system for calling group members to remind them about upcoming meetings. These special reminders are also a good idea for new group members. REMINDER: When making decisions about the schedule, dont forget about Mother Nature and the holidays. You need to think about what your group will do if bad weather or a holiday prevent the group meeting. Will you try to make up these meetings? How will you notify members that a meeting has been canceled? As you try to decide how often the group should meet, think again about the groups purpose. If your group is focused on providing emotional support sessions, you will probably need to meet more frequently than a group that is focused on meeting parents informational or practical needs. The intimate nature of emotional support sessions requires constant contact and feedback. For a child who is on treatment, a lot can happen in two weeks! Consider meeting every other week instead of once a month.
Pullout 7. Group Meeting Site Checklist Form

This Pullout is available in Appendix D for easy photocopying. Possible Maximum Meeting Site Capacity 1. 2. 3. 4. How many people will the space accommodate? _______ Charges: No Yes Amount $_________ Dates when space is available? ___________________ Is there parking on the premises or nearby? Yes No How much does it cost? $_____________ 5.) Are the restrooms on the same floor as the meeting room? Yes No
Source: Adapted from Family Support Group Guidelines, 1986, p. 25.
Cost
Dates Available
Parking
Restrooms Restrictions
Services Available
Accessible by bus?
Additional Notes
1.) 2.) 3.) 4.)
6.) Are there any restrictions (e.g. no smoking, noise levels, etc.)? Yes No 7.) Does the facility provide coffee, slide projector, blackboard, etc? Yes No 8.) Will public transportation be easily accessible? Yes No
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Meeting more frequently will make it easier for parents to feel comfortable and connected with one another. Frequent meetings also minimize the feelings of intimidation that some new members have about meeting everyone all over again at the next meeting. The groups meeting schedule may also be affected by the kind of community it serves. If the group is in a rural location, where it may be difficult for members to meet regularly in a central location, you may decide to hold group meetings and activities on an annual or semiannual basis and to rely on your groups newsletter or telephone network as a way of maintaining regular communication. In contrast, a group located in a city with good public transportation may decide to meet every other week. The right meeting schedule for your group is convenient for its members, suited to the geography of your community, and, most importantly, able to help the group fulfill its purpose and meet members needs.
Box 23. The Different Layers of Membership
Core Members
Members who usually attend
Is bigger always better?

The quick and dirty answer to the bigger is better question is no. Group size varies tremendously, and attendance often varies depending on the kind of meeting or activity being sponsored. Do not make the mistake of measuring your groups success by its size. Your groups success is determined exclusively by how well it meets the needs of its members. Different members have different needs. As a result, most groups have several sub-groups within the group. In many cases, there is a small core of regular attenders who come to all of the group meetings. Groups can also have a larger group of families that may only come to the occasional meeting and the annual events and parties. In addition, many groups have a much larger group of parents, donors, and professionals who participate in the group through its mailing list. Box 23 emphasizes the different layers of membership people may adopt with regard to their involvement in a local group. It is most important to keep the core members satisfied; they are the key to involving everyone else. Meeting topics should be selected to appeal to members who usually attend, and some special sessions can be designed to reach peripheral members or all other parents.
Peripheral members who sometimes attend
All other parents of children with cancer
Other family members and family friends
Although there is no optimal size for a parent support group, it is worthwhile to consider some of the potential advantages of both large and small groups and to think about how you will handle your groups growth. Although most groups start out small, they have a tendency to grow. Will you limit the size of your group? Will you change your groups purpose or form additional groups? Small groups (5-10 core members) have the advantage of: offering members more individual attention making it easier for members to get to know one another encouraging more participation from group members being less intimidating for members who are shy Large groups (more than 25 core members) also have advantages. These groups: have access to more ideas, skills, and resources can provide members with greater potential for learning because of the presence of additional role models provide more opportunities for support feedback and friendship face fewer difficulties when members are absent may find it easier to obtain nonprofit status can raise more money As you discuss the relative merits of both large and small groups, remember your groups purpose. Groups focused on pro-
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viding emotional support sessions are usually more effective when they are smaller. On the other hand, educational groups and groups that do a lot of fundraising and advocacy work can benefit from having many members. The more people these groups have, the more energy, skills, and resources they have available to fulfill their groups purpose.
Who are our group members?

The needs, skills, and experiences of the people who join your group will have a significant impact on your groups goals and objectives. For example, groups whose membership is limited to families of children with a particular diagnosis are likely to have a different focus from a group whose membership includes families of children with a variety of diagnoses. Before making any decisions about who to include in your group, take some time to think about who the members of the childhood cancer community in your area are. What are their needs, skills, and experiences? How might these impact your groups purpose? Then ask yourselves if you will: limit your groups membership to parents of children with canceror will you include other family members (siblings, grandparents, aunts, uncles)? include long-term survivors and/or children who are on treatment? limit membership to families of children who have a specific type of cancer? invite the parents of a child who died of cancer to join (remain in) your group? open membership to friends and supporters? include professionals who work with families of children with cancer? Consider some of the advantages and challenges of having a diverse membership. Groups with a diverse membership offer a broader range of coping skills, life experiences, and levels of expertise. This diversity can be especially helpful in task-oriented groups, where a variety of skills are needed to accomplish the groups goals. Diversity also benefits groups that are focused on meeting the informational needs of parents. A mixture of experiences will provide members with more opportunities to learn new coping skills and will allow them to see their experience from a range of different perspectives. For example, in one group, parents of deceased children were asked to share their experiences in dealing with the terminal phase. This discussion included information about preparing for death, dealing with hospice, and working with the undertaking establishment. It was very helpful! On the other hand, there are also advantages to a more limited group membership. When members share many similarities, they may find it easier to bond together and to feel a sense of belonging. This is especially important for groups focused on meeting their members emotional needs.
Decisions about group membership will help you know where to target your recruiting efforts. But they are not written in stone! As your group changes over time, so will its membership. Subgroups. Some groups attempt to balance the similarities and differences in membership by forming subgroups. Some subgroups maintain their own meeting schedules and activities, while others meet only as smaller discussion groups during regular group meetings. Special subgroups can be formed for bereaved parents, for long-term survivors of cancer, for parents of children with brain tumors, for parents of teenagers, for parents of preschoolers, for parents of children undergoing a bone marrow transplantation, for parents of children whose condition is terminal, for mothers, for fathers, and/or for single parents. Special subgroups can also be formed for children, for their siblings, and for teens. In each case, the subgroup allows the larger group to take advantage of its diversity, while still allowing individual members the comfort and intimacy of talking to those who understand their experiences more closely. If your group is thinking about forming subgroups, be aware of the possibility of conflict and competition. Helping subgroups maintain their sense of connection to the whole group is important. Use your group newsletter and periodic social events to promote a sense of togetherness among your different subgroups. For more information about setting up specific subgroups, see Chapter 18.
Guidelines for group membership

Beyond establishing who can become a member of your group, you will also need to decide on some guidelines for how one becomes a member of the group. Does one become a member by attending meetings and events? Being on the mailing list? Filling out a membership form? Paying dues? Does membership need to be renewed? If so, how will this be done? How and under what circumstances do individuals cease to be members of the group? Can parents of children who have died or been cured retain their membership? (To learn more about the issues involved in including bereaved parents in your group, see Chapter 18.) (These questions were adapted from Nathanson, 1986, p. 70.) Open vs. closed membership. In an open group, members are able to join the group as soon as they are ready. Open groups are easy to join and easy to leave. Closed groups begin and end with the same membership and meet for a limited amount of time. The stability of a closed group may make it easier for members to get to know and trust one another, but open groups dont make new members wait to get the support they need. Open groups also offer current members a constant influx of new information, ideas, and energy. Most groups for families of children with cancer have an open membership. Even when members know each other well, be aware that their needs are likely to change over time. As veteran members move away from the intense emotions surrounding their childs diagnosis, you may find that they are more interested in social activities and advocacy work than in the emotional sharing sesCandlelighters Childhood Cancer Foundation
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sions that interest new members. Think about ways in which you can adapt your groups structure to meet the changing needs of all group members.
Formal vs. informal

Your group can be as formal or as informal as you want it to be. On the formal end of the spectrum are groups, like One Day At A Time (described in Box 25), that file for tax-exempt status, write articles of incorporation, have formally elected officers and a board of directors, and conduct their meetings using formal
agendas. These formalities can help some groups achieve their goals, but they can also prevent a group from developing a comfortable, family-like atmosphere. On the other end of the spectrum are informal groups that govern themselves and conduct their business in a much more casual way. The lack of formality in these groups helps them create a relaxed and comfortable atmosphere, but it can also lead to confusion and misunderstanding. The Feelings First group, described in Box 24, is a good example of an informal group.
Box 24. Feelings First: An Informal Group

The FEELINGS FIRST group of parents of children with cancer was organized three years ago by four couples who wanted an opportunity to meet and talk with one another about the difficult times of parenting an ill child. They had met at the yearly educational session conducted by the hospitals Chief Pediatric Hematologist/Oncologist. Although they felt it had been an informative and useful meeting, they felt a need to talk further with other parents. After talking informally with one another over the meetings coffee and doughnuts, they decided to try to meet regularly on their own. They decided that at their meetings they would try to offer support to one another: to acknowledge the tensions and feelings they had that no one else seemed to understand fully. The hospital seemed like a stiff and chilly environment for them to meet in, so they met at one anothers houses, in a rotating fashion. As the first year of their monthly meetings unfolded, they met other parents in the clinic or on the hospital wards, and eventually three more families joined their meetings. Most of the time mothers and fathers both came, but sometimes just one parent attended from each family. The members are quite different from one another. Of the original four couples who founded this group, one is composed of an accountant and a schoolteacher, another an assembly-line worker and a homemaker, another a former nurse and a businessman, and another a medical administrator and a school clerk. The three newer families include a mechanic and a homemaker, an engineer and a social worker, and a businessman and a waitress. Although they meet once a month, they occasionally call one another between meetings. Most sessions consist of parents sharing whats been happening to them and their children with cancerthose in treatment, those successfully off treatment, those in relapse or peril of dying. Since they have became quite close they often talk about other issues, such as their other children, their relationships with their own parents, and sometimes their feelings about the hospital staff and procedures. Conversations are often very intense. At one meeting several parents were discussing the ways in which men and
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women seem to cope differently. One mother said to the group, in front of her husband, John helps out a lot, but he often doesnt tell me what he is feeling. It makes me feel alone. John replied, I feel bad and like crying a lot of the time, but I just cant break down. I am the rock of this family, and I have to be strong for everyone. Another father said to John, in response, Somewhere along the line youre going to discover that youre a pretty mushy rock. Theres no point in holding it all in when youve got someone who wants to share it with you. Its not so terrible to break down once in a while. Of course this exchange led to vigorous discussion and members of the group understand that such differences on emotional issues have to be dealt with carefully. Sometimes one of the parents would bring in an article from the Candlelighters Newsletter, and people would read and talk about it. These and other discussions of how parents themselves dealt with their feelings, and their childrens illnesses, made parents attending these meetings feel quite close with one another. The more they shared the more comfortable it became to share even more deeply. But once in a while they discovered they wanted to do something else, and twice a year they began to invite a physician and a social worker from the hospital staff to come and talk with them about recent advances in treatment, about preferred ways of coping, and what psychosocial services the hospital had to offer (unfortunately not much). Since most of their meetings involved talking with one another and sharing feelings, this group has little need for a formal charter and bylaws. Although one of their members does generally operate as a discussion leader and calls parents to remind them of the meeting, they do not hold formal elections. They do, however, consider themselves members of the Candlelighters Childhood Cancer Foundation, and individuals get the Newsletter and often make individual contributions to the Foundation. They are happy with their size and style of operations. Sometimes they have asked the social worker at the hospital to put them in touch with other parents of newly diagnosed
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Box 24. Feelings First: An Informal Group

children, and in that way new members come along every so often. In the three years of their existence two couples have left the group (one child ended treatment and the parents no
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longer felt a need to meet, and one family moved to another city).
Box 25. One Day at a Time: A Formal Group

The ONE DAY AT A TIME group was organized ten years ago by a social worker, a nurse, and several parents of children with cancer at a large metropolitan hospital. The staff sent out notices of the groups formation to all parents of children with cancer who were being treated at the hospital. In this way they were able to reach a large number of people. About fifty parents of children with cancer and four to five staff members come to most meetings. The meetings take place in a partially separated area in the lunchroom of the hospital. Most meetings start with a presentation by a parent who chairs a committee of the group. Active committees include Finances and Fundraising, Publicity, Education, Camping, Housing, and Special Events. Any questions or discussion of these committees plans follow. After this business is completed, a parent or staff member leads a discussion on a topic that is deemed to be of general importance and interest: new developments in treatment for childhood cancer, helping the child with cancer in school, cooking and feeding the child with cancer, how families cope together, carrying the spiritual burden. Sometimes a panel of presenters rather than a single expert will organize and focus these topics and discussion. About once a year the group invites a staff member or officer of the national Candlelighters Childhood Cancer Foundation to come and talk with themto tell them what other groups are doing around the country and what new plans CCCF has made. One Day At A Time pays for the visitors airfare and lodging out of the groups treasury. In addition, the group sends two parents to CCCFs leader workshops, and then these parents report back what they learned to the entire group. They are listed in CCCF materials as a strong local group. Knowing your groups purpose is the key to deciding how formal or informal the group should be. In general, dont take on more structure than you need. A small group focused on providing emotional support does not need a board of directors and bylaws. On the other hand, groups focused on fundraising need some of these formalities in order to meet their states legal requirements for raising money. Fundraising is a time-consuming activity that requires a great deal of organization and a clear system for maintaining accountability. Therefore it makes sense for groups who are interested in fundraising to build more formality Twice a year the group prints and distributes a local newsletter that has a circulation of over five hundredthe newsletter goes mostly to parents but also to several local schools, service agencies, staff members, and several other mutual support groups for families of children with cancer in other states or locales. Recently the group and the hospital co-sponsored a family picnic day, which drew four hundred people. The group has a formal charter and bylaws and uses parliamentary procedure to govern its meetings. It has a taxexempt status as a charitable organization and uses various techniques to raise funds to support its plans. The funds are used to pay for the groups newsletter, provide refreshments at meetings, pay for speakers expenses when necessary, support housing for families who have to travel a long distance for treatment, rent television sets for hospitalized children, and support development of a special summer camp for children with cancer. The group has a governing board of six parents and one staff member, all of whom are elected at a yearly meeting. The staff member elected to the board has a special responsibility to act as a liaison between the hospital staff and the group, carrying information and suggestions or plans in both directions. This board meets monthly to plan the regular bimonthly meetings of the entire organization. The parent members of the board include four women and two men: a businessman, a bartender, a homemaker, a social worker in the community, an insurance company executive, and a teacher.
into their groups structure. The same is true for groups who are interested in doing advocacy work and making changes in the medical system. If you think your group might benefit from a formal organizational structure, Chapter 17 includes more information about the steps involved in becoming a more formal group.
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Chapter 16: Group Leadership

eaders are the energy people in any group. Some people lead groups for families of children with cancer by virtue of their great charm and personal charisma. Others become leaders because they know a lot about the issues that bring us together, and some lead groups because they know how to make an organization work and grow. In other cases, a leader becomes a leader simply because no one else is available and ready to do the job. Whatever the situation, leaders need determination, energy, and enthusiasm to make a mutual support group work. Above all, it is crucial that leaders have the trust and respect of group members. This chapter will address some of the questions that groups have about leadership qualities and strategies.
Should leaders of parent groups be parents or professionals . . . or both?

Most mutual support groups for parents of children with cancer are led by parents. That fact makes it clear that these groups are run for parents, by parents. But thats not the only possibility. Some groups are run by medical or social service professionals: physicians, nurses, social workers, health educators, and so on. We generally call these support groups instead of mutual support or self-help groups because, although they provide support, they are run for parents by others. Still other groups are run by a combination or coalition of parents and professionals. In these groups professionals may offer advice and be part of a leadership team, but the primary responsibility for leading meetings and running the group rests with the parent-leaders. Professionally led groups are more likely to emphasize formal emotional support sessions such as counseling and less likely to raise funds or advocate for changes in the hospital or clinic operations. They usually are less formally organized (they seldom have a charter and bylaws) and generally do not meet for more than one year. Parent-led groups are more likely to have a wide range of activities, including information sessions, opportunities for emotional support, social and recreational events, as well as fundraising programs and efforts to advocate for changes in medical system procedures. Groups that are led by coalitions of parents and professionals may have the best of both worlds. They seem to have all the benefits of the parent-led groups, but in addition they have excellent access to professional medical personnel and the services and resources they can provide, such as access to physicians, meeting rooms, and professional referrals and connections. In some communities, professional staff have expressed serious doubts about the wisdom of parent-led groups. These staff members may feel that parents of children with cancer are already under great stress, that we have little time and energy left over to run a group, and that running a group takes special skill that professionals have achieved as a result of their special training.
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Moreover, it often is argued that parents are not experts on childhood cancer and are likely to spread misinformation to other parents. This position is often the result of a narrow conception of the issues that parents are struggling with and a lack of understanding of our real skills and knowledgeknowledge that we have had to absorb as part of the process of dealing with the illness. (For more information on dealing with these attitudes, see Chapter 25 on working with professional staff.) Moreover, to the extent that a diagnosis and treatment of childhood cancer makes many parents feel powerless and unable to ensure their childs recovery and survival, participation in a group of their own may help rekindle some of these feelings of energy and empowerment. Parents are very careful about sharing medical information, and they often check with professionals or invite physicians and nurses to talk with the group about medical matters rather than doing it themselves. There really are few dangers to parent-led groups. These are local, grassroots, voluntary organizations, much like many other democratic and citizen-led organizations in neighborhoods throughout the United States. We can rely on one another to lead each other gently and competently through the many difficult issues surrounding childhood cancer. Different groups solve these leadership issues in different ways. It will be important for you to consider your goals and preferred styles of operating before you decide. Some of the most important benefits of group involvement reported by parents is their sense of empowerment, ability to do things together, and opportunity to talk openly and privately with others in the same boat. Therefore, CCCFs preference is for parent-led or parent-professional-led groups. These groups seem to hold the best promise for providing the widest range of activities that can appeal to the most parents, and for helping parents discover their own strength and power to improve their own and their childrens lives.
Selecting leaders
Think about the process by which your group will select its leaders. In some groups, the person who started or founded the group is the leader, has always been the leader, and continues to be the leader. A danger is that this may make the group his or her group, rather than the parents group. Leaders whose time has passed sometimes continue to lead by default in this way. New generations of group leaders can be appointed by a governing board, can volunteer for this job, or can be elected by the membership. Leaders and leadership teams. No single person can provide all the leadership to a mutual support group for an extended period of time. There is just too much to do, and besides each parent also has things to do in his or her own family! In general, it is advisable for group leadership to be flexible and shared among several people. One person can plan the agenda, another run the meeting, another provide refreshments, another plan and organize
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a party, another direct a fund-raising campaign, another link to physicians and nurses at the hospital, and so on. One way to ensure that all parents feel an important part of the group is to divide the responsibility for leading a variety of the groups activities among many different members. Some suggestions for developing a teamwork approach to group leadership include: delegate tasks among a number of members use a buddy system where present leaders work with other members to accomplish tasks ask people to volunteer for tasks in which theyve expressed an interest build on existing friendships by asking pairs and trios of people to work on projects together dont be afraid to say no and ask others to take over some tasks trust new leaders to do things their own way rotate leadership and responsibility for other group-related tasks These ideas also can help prevent burnout of current leaders due to overwork. There also may come a time when the groups leader experiences a personal or family crisis: parent leaders may be unable to fulfill their roles if their childs condition changes or if they suddenly need to be at the hospital a great deal of the time. Or, parents whose children have been cured may want to leave the group after several years. Co-leaders can then step in without having to cancel or change group meetings.
help the group evaluate its activities and take new directions debrief regularly with co-leaders after meetings delegate power and decision-making seek out and develop future leadership know when to stop being a leader
Good leaders know how to solve group problems or how to get the group involved in solving its problems. At the end of this chapter we have listed seven common group problems that leaders often have to wrestle with. Take some time to think about how you (as a group leader or as a concerned member) might respond to each situation. Share your reactions with other group members and see how others might respond.
Leading discussions
Most mutual support groups for families of children with cancer plan time for serious discussions about members children, their family situations, their relationships with the medical staff, or other problems that have arisen in their family or community. Running these types of emotional sharing sessions, or problemsolving sessions, can be quite different from running a business meeting or moderating a lecture or panel presentation. The national organization of groups for parents of children with cancer has developed a short list of questions (Box 26) that leaders can pose to initiate and manage good discussions.
What do effective group leaders do?

Effective group leaders have a good sense of what members want from the group and can help provide opportunities for their needs and desires to be satisfied. That means that good group leaders are good followers of members needs, concerns, and desires. They are in touch with the members and devote themselves to them. Good group leaders also: demonstrate commitment to the group and its goals find out what members want and need find out which members have special skillsin planning, fundraising, public relations, making postersand use them for these tasks listen to and respect members views, even when he or she differs involve members in helping to achieve group goals rotate task responsibilities show appreciation for other members contributions foster a sense of togetherness in the group expect and are comfortable with differences of opinion recognize their own limitations take time to take care of their own needs guide the group through its growth and changes
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Box 26. Questions for Group Leaders to Use in Meetings

1. Questions designed to open up discussion: What do you think about this problem/situation? What is your experience in dealing with this type of problem/situation? What do we need to know more about in order to improve our understanding of this problem/situation? 2. Questions designed to broaden participation: Now that we have heard from a few of you, are there others who wish to add their ideas? What other aspects of this problem or situation do we need to explore? 3. Questions designed to limit participation: Thank you for your comments. Would any of you like to add to the ideas that Mark has expressed? You have made some very interesting comments, and I am wondering if someone else might like to respond to them or to make some of their own remarks. Since not everyone has had a chance to speak yet, I wonder if you could save your comments until a little later, Sara? 4. Questions designed to focus discussion: Where are we now in relation to our goal for this discussion? Shall we review what has been said so far, so that we can evaluate our progress in this discussion? Youve made an interesting comment, and I hope that we will have time to discuss it later, but for now, shall we get back to the focus of our discussion, which is . . . ? 5. Questions designed to help the group evaluate itself: We are coming to the end of our meeting, so shall we take a minute to talk about what went well in this discussion and what we hope to improve for our next meeting? It seems like we are getting stuck on this issue. I wonder what we could do to move the conversation forward? 6. Questions designed to help the group reach a decision: Am I correct in sensing that we have reached some agreement about these points? (Give a brief summary of the points.) It seems like we are approaching a decision on this issue. Before we make the decision, shall we take a minute to talk about the ways this decision could affect our group? 7. Questions designed to lend continuity to the discussion: Before we begin todays discussion, shall we review what we covered last time? Would someone care to suggest points for which we need further preparation before the next meeting? It looks like we dont have time to make this decision today, so shall we take a minute to decide on some of the points we should cover at our next meeting?
Leadership transitions . . . passing the torch

Sometimes the founder or long-term leader of a local group feels that he or she is too important to be replaced. This is a mistake! And sometimes these mistakes lead to struggles between old leaders and new leaders, between original members who have become a clique and parents of children who have been diagnosed more recently and are newer group members. In these struggles precious time and energy is wasted, feelings are hurt, and some groups die off as a result. To prevent this situation, it is important for leaders to plan for the time when new leadership can emerge and take over direction of the group. The ability of a mutual support group to persevere over time is dependent upon its ability to pass the torch from one leader or one set of leaders to another. There are several ways to accomplish this. The first involves building leadership transitions into the
operating rules of the groupperhaps a term limits clause where the bylaws set a limit on the length of time any individual can hold a leadership office. Regular elections can make this process operate smoothly. Some groups have found it useful to hold special leadership training programs and have brought in specialists to prepare many members for future leadership roles. One such workshop was cosponsored several years ago by the Candlelighters Childhood Cancer Foundation and the California Division of the American Cancer Society. Box 27 contains an outline of the topics covered during this workshop.
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Box 27. CCCF and ACS Leadership Workshop

Session #1: Introduction to the Workshop and to the Candlelighters Childhood Cancer Foundation Programming on the Basis of Parents Needs, Interests, and Contributions Leading Groups and Group Meetings Leading Discussions and Solving Problems Related to Medical Staffs Maintaining Groups over Time; Concerns about Leadership Changes and Helping at Times of Relapse, Terminal Illness, and Death of a Child Reaching Out and Working with Others
Box 28. Situations for Discussion

1. Election of new officers will be coming up within the next couple of months. The parent who started the group is moving out of state. Even though there are a number of people with potential leadership, no one seems eager to come forth. What kind of strategies would you use in this situation? 2. Sue is a very energetic and capable member. Since her daughters death she has devoted all of her time to the group. She volunteers for everything and others just seem to sit back and let her. As a group leader, what concerns might you have and what might you think of doing? 3. Jim is a sincere but outspoken parent who has ideas and opinions about everything. Often this works well for the group, but there have been occasions when some in the group have had different opinions or have felt short-changed in the decision-making process. You definitely dont want to lose Jims contributions. How can you tactfully address this situation? 4. You have had a nice small group of families for a few years but are aware that few, if any, families are not white and middle class. Do you think the lack of diversity is an issue? If so, how might it be addressed? 5. Families have been getting together for a couple of months. A number of activities have been proposed, and its been very pleasant, but things dont seem to be moving. What might you do to build the groups momentum? 6. Some parents attended the meeting last night for the first time. They seemed to have different backgrounds and interests from other members. Can or should groups be all things to all people? 7. Momentum is building in your group but things are definitely still in the formative stages. A coalition of disability groups wants you to become members and are anxious to have your vote for increased community services. Some are anxious to join, but others are unsure about the implications. What is the best course of action? How will your group go about making its decision?
Session #2: Session #3: Session #4: Session #5:
Session #6:
More recently, the Candlelighters Childhood Cancer Foundation has sponsored several Group Leaders Conferences in different parts of the country. The agenda for the group leaders workshop held in Alabama is included in Chapter 4. Call the national office of Candlelighters Childhood Cancer Foundation for information on the time and place of the next group leaders workshop. Perhaps the most important step in effective leadership transitions is for current leaders to delegate tasks so that other members will get a sense of what it is like to lead group sessions and activities. Some additional suggestions that can make leader transitions easier include: having an explicit strategy for passing the torch having a program for orienting and preparing members to be new leadersperhaps using the problem situations in Box 28 as a focus beginning by delegating small tasks asking some members who seem to be friends to take on a task together, which will make it easier for them understanding the leadership abilities of each member making clear when the leader will step down passing along special knowledge and resources the leader has gathered over time
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Chapter 17: Establishing a More Formal Group
his chapter provides information about some of the steps involved in establishing a more formal group. Specifically, we will discuss the steps involved in incorporating the group under the Nonprofit Incorporation Act and obtaining taxexempt status. We will also discuss the role of a board of directors and the creation of bylaws.
The advantages of formality

As we mentioned in Chapter 15, a more formal system of responsibility and delegating tasks is beneficial for groups who are interested in fundraising and advocacy. Status as a tax-exempt charitable organization allows groups interested in fundraising to benefit from the fact that individuals, businesses, and foundations are more likely to donate money when they know that the donation will be tax deductible. In fact, many foundations and corporations require that those applying for grants be registered as a tax-exempt charitable organization. Status as a tax-exempt organization also allows the group to take advantage of a lower postage rate for bulk mailings, and it makes the group eligible for exemption from certain state and federal taxes. Establishing a more formal group can also add to the groups legitimacy in the eyes of others. The more organized and formal the group appears, the more likely it is that hospital administrators, politicians, and community leaders will take the group seriously. Obtaining this type of respect can be an important part of convincing others to take the actions necessary to help families overcome the challenges of childhood cancer. NOTE: Although it is not absolutely necessary, it helps to have the assistance of a lawyer or an accountant when completing the paperwork involved in becoming a more formal organization. Many groups are able to obtain free assistance from a parent who is a lawyer or accountant or from the local legal aid society.
The election of directors A statement of nonprofit intent A statement of what will happen if the group ends The office address and name of the registered agent The names and addresses of all members of the Board of Directors 9. The names and addresses of those completing the application for incorporation 10. Date and signature of all the applicants In addition to developing its Articles of Incorporation, the group will need to obtain the forms for incorporating from the states Department of Commerce, Secretary of State, or Attorney Generals office, whichever office is responsible for supplying the forms in your state. Once you have obtained the forms, they must be signed in front of a notary by at least three group members who are willing to act as the groups original incorporators. If possible, sign two originals and make several copies. (It is good to have extras in case the originals are lost or damaged.) Send one of the notarized originals to the address on the application with the appropriate filing fee. If the group is accepted for incorporation, you will receive a letter from the Secretary of State. You will also receive a letter from the State Controllers office. This letter includes the groups tax number and the tax exemption form. Make copies of the blank tax exemption forms and have them ready when you make purchases on behalf of the group.
4. 5. 6. 7. 8.
Bylaws
Bylaws are the rules that the group develops to govern its operations. They can be a valuable resource for preventing and resolving conflict within the group. However, if they are unclear, they can lead to bitter board meeting battles, and if they are too strict they can make it impossible for the groups governing body to take any action. Therefore it is important to think carefully about the groups bylaws. In general, the bylaws should be simple and concise, and they should be organized using the following format: Article I The groups name Article II Purpose of the group Article III Group membership Article IV Officers Article V Elections of officers and terms of office Article VI Duties of officers Article VII Meetings Article VIII Committees Article IX Quorums Article X Amendments Bylaws do not have to be filed with incorporation papers, but you will need to send them with your tax forms to the IRS. For more
Articles of incorporation
To incorporate the group under the Nonprofit Incorporation Act, the group must develop Articles of Incorporation. Articles of Incorporation are general statements that describe the groups structure and purpose. (A more detailed description of the group is contained in the groups bylaws, which are discussed later in this chapter.) It is best to keep the groups Article of Incorporation as simple as possible, because any significant change requires a formal and time-consuming amendment process. Articles of Incorporation should include the following information: 1. The groups name and location 2. The groups membership 3. The groups purpose
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information about how to write bylaws, see the example bylaws included in Appendix C.
501 (c) (3) tax-exempt charitable status

As a 501 (c) (3) organization, your group will be both tax exempt and tax deductible. Tax-deductible status means that individuals and corporations can deduct their gifts to the group on their income tax. Tax-exempt status means that the group is exempt from state and federal income tax, Federal Income Compensation Act (FICA) tax, state sales tax on items purchased for the group, and from state and federal unemployment taxes. To obtain status as a tax-exempt charitable organization, the group must complete the following application materials. (All of these materials can be obtained from an accountant or by calling the Internal Revenue Service at 1-800-829-1040. You might also be able to find them by asking for them at the public library.) 1. IRS Publication #557 2. IRS Form SS-4, Application for Employer Identification Number 3. IRS Form 1023, Application for Recognition of Exemption under Section 501 (c) (3) of the Internal Revenue Code Once you have completed these forms, send copies of them to the IRS for review. Do not send the originals, because all application materials become property of the IRS and are not returned. If the application is approved, the IRS will send you a letter of determination with all of the pertinent information and dates. Keep this letter and have it on hand to show all potential donors. At that point, the group has a five-year period in which to prove that it is accomplishing its stated mission. At the end of this period, if successful, the group will be granted permanent status. As an approved 501 (c) (3) organization, the group will use IRS Form 990 to complete its annual reporting to the IRS. The due date for these forms is based on the date the group filed for nonprofit status. NOTE: Remember to include the groups tax-exempt number on all of the groups literature. People wont know that their donations to the group are tax deductible unless you tell them.
for potential candidates. 1. Friends. Friends, colleagues, and associates are good candidates, but they should not be relied on exclusively. 2. Natural constituents. Parents of children with cancer, medical professionals, and survivors of childhood cancer all fall into this category. They have a connection and interest in the groups mission, purpose, and activities. 3. Donors. Make a list of all the groups supporters, whether their donations were materials, services, or money. 4. Persons with skills and expertise that are pertinent to the groups goals. For example, it helps to have people with skills in public relations, law, accounting, fundraising, medicine, mental health, advertising, retail, or computers. 5. Community Leaders. These people include school principals, members of the city council, religious leaders, business owners, etc. As the leader of various organizations, these people are in a position to spread the word about the group into the wider community and to recruit volunteers. Once the committee has a list of potential candidates, they can begin to evaluate each of the potential candidates. The following list of questions can be used as part of this evaluation process. Does the candidate reflect the diversity of the group and its members? Does the candidate demonstrate leadership skills? Does the candidate appear to have the potential to help the group raise money if necessary? Does the candidate appear interested in the mission and purpose of the group? Does the candidate exhibit professionalism and good communication skills? Does the candidate have the willingness to participate and work hard? Does the candidate have the time to devote to the position and the group? Once the committee has selected the most appropriate candidates, it is time to invite them to join the board. When you make this invitation, be sure you are clear about what will be expected from members of the board of directors. The list of board of directors responsibilities used by Candlelighters Childhood Cancer Family Alliance can help you make these expectations clear. (This list is included in Appendix C.) If a candidate turns you down, dont get discouraged. Ask him or her to give you the names of other people they think might be interested in the position.
Board of directors
A board of directors serves as the governing body for the parent group. As such, it is responsible for setting policies and making decisions regarding the budget, the groups programs and services, and the groups fundraising plans. Members of the board of directors are selected by a nominating committee. This committee is responsible for identifying, screening, and selecting the best candidates for the board. Some groups choose to limit membership on the board of directors to parents of children with cancer. Other groups have mixed boards with parents, professionals, and community leaders. If the group is interested in having a mixed board, the committee should consider the following five sources
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Chapter 18: Separate or Together?

n this chapter we address some of the special programs that groups might wish to adopt to deal with family members who have special needs or who wish to form subgroups or separate groups. One of the critical questions facing all mutual support groups for families of children with cancer is how to deal with the very different needs of different families and different family members. Sometimes parents of children with very different diagnoses (e.g. leukemias, brain tumors, osteosarcomas) or of very different ages (e.g. children under five years, teenagers) have very different experiences and different needs. Parents of children who have died may want to talk about different topics, in different ways, than do parents of children who are living with cancer. And the children with cancer themselves, and their brothers and sisters, may want to meet separately from their parents and from each other. How can a group accommodate or meet these different peoples needs and desires? There are some advantages to all parents of children with cancer meeting together, and some advantages to the formation of separate groups or subgroups. The advantages of subgroup or separate group formation are: people can talk most intimately with others who are in their same situation a specific focus makes it easier to recruit members who desire that focus a specific focus makes it easier to generate resources (including funds) to respond to that agenda guest experts can speak most directly to a limited set of issues On the other hand, there are advantages to all parents sticking together: a broad range of parents means more people, in terms of multiplying parent voice and power people in different situations have much to teach and learn from one another all parents of children with cancer have a lot in common despite their differences larger groups can command more resources (including experts and funds) and attention One of the most creative ways to think about this situation is not to think about separate OR together but to think about separate AND together. Parents with different situations and needs can meet separately for part of a meeting and together for part of a meeting. Or, they can have some meetings all together and some meetings separated. A large group can also have subgroups with special interests and needs. In this way we can take advantage of both ways of organizing.
What should groups do?

There are many ways that groups can provide parents with opportunities to talk to others who facing the same challenges they are. Some of these are described here. Form a separate group. This is probably the most difficult option. Very few groups have the resources needed to create separate organizations. The group as a whole may not be big enough, and there may not be enough parents whose children all have the same diagnosis. Meeting separately also prevents parents from being able to learn from the differences among their experiences. Break into subgroups. To avoid the difficulties involved in forming a separate group, some groups have elected to break into diagnosis-specific subgroups for part of the meeting. This strategy allows the group to take advantage of its diversity and to provide parents with the opportunity to connect with others just like them. Create a telephone list. This is probably the easiest way to give parents a chance to talk to someone else who is living with the same diagnosis. Groups simply create a special directory of parents who are willing to discuss particular diagnoses. Because this option involves only those parents who are interested, it is unlikely to disrupt the group as a whole. Take advantage of the resources offered by other childhood cancer groups. If your group exists in a community with other diagnosis-specific groups, you can provide interested parents with a list of these additional groups. A list of some of these groups is included in Appendix A. Like the telephone directory, this option provides parents with access to the specialized support they seek and requires very little of the groups resources. When deciding between the options described above, ask yourself the following questions. How many parents have expressed an interest in talking to others whose children are living with the same diagnosis? How much interest is there in having a separate group? Do you have enough resources to sustain more than one group? What else is available in the community? If you are fortunate enough to live in a community with diagnosis-specific groups, it probably isnt wise to use your groups resources to duplicate their services. Similarly, it would not be wise to establish diagnosis-specific groups if the larger group lacks the resources and interest needed to do so. In these situations, the group is better off taking advantage of the existing resources and/or creating a telephone directory.
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If your group does decide to form a separate organization, pursue this project in the spirit of working together to help each other overcome the unique challenges of having a child with cancer. While there are differences among us, we are all in this together, and it is important to avoid the possibility of competition and animosity between the newly formed groups.
Diagnosis-specific groups
While we all face the emotional, informational, social, spiritual, and practical challenges that accompany a cancer diagnosis, the specific nature of these challenges differs slightly depending on the type cancer that our child has. For example, the severity of the childs prognosis can lead to different levels of emotional and spiritual challenge. The less likely it is that the childs treatment will be successful, the more likely it is that we will struggle with our fear, grief, frustration, faith, and anger. Similarly, differences among the procedures used to treat our children create differences in the practical challenges we face as parents. Whereas the parents of a child who has had an amputation might be wrapped up in the logistics of obtaining a good prosthesis, the parents of a child who has had a bone marrow transplant are more likely to be worried about what is required to reduce their childs risk of infection. The differences among treatments also create different informational challenges. Parents of children with brain tumors are interested in information regarding the radiations effect on their childrens ability to succeed in school, whereas parents of children who have had abdominal radiation will be more interested in information about the radiations effect on their childrens ability to have children of their own. The social challenges we face as parents may vary depending on how visible the consequences of our childs treatment are. In cases where the consequences are obvious, there can be significant effects on the familys opportunities to socialize with others. For example, because a childs bald head or amputation is more likely to evoke curious stares and questions from strangers, the childs family may be more reluctant to socialize in public places. In light of the potential differences in our experiences, it seems only natural that we would seek opportunities to talk to other parents whose children have the same diagnosis as our child. Somehow, talking to someone who is going through exactly the same thing makes it easier to talk openly and specifically about the challenges we are facing.
Bereavement groups
While it is relatively easy to recognize the challenges of grieving parents, most groups find it very difficult to know what they can do to help their grieving members. In particular, groups struggle with decisions about whether parents of living children and parents of deceased children should meet together in the same group. Whereas some groups choose to have all parents meet together, other groups break into subgroups for part of the meeting. There are also groups that establish separate groups for grieving parents.
Mixed groups. One of the most significant advantages to meeting as a mixed group is that it provides grieving parents with the opportunity to continue receiving care and support from their friends in the group. Meeting as a mixed group also helps the parents of children who are living to confront the fears they have about the possibility of their childs death. On the other hand, meeting as a mixed group can also present some significant challenges. Because parents of deceased and parents of surviving children have such different needs and concerns, the group may find it difficult to provide information and activities that are relevant and helpful to all of its members. Meeting together can also create some communication problems. Parents of living children may feel guilty about discussing their hopes for a cure in front of parents whose children have died. Similarly, the parents of a child who has died may be hesitant to talk about their childs experience because they are afraid of destroying another parents hope. Grieving parents may also feel that it is too painful to be around parents of children who are living. Mixed groups may also find it harder to attract new members. Because parents of children who have been newly diagnosed are sometimes frightened by meeting the parents of a child who has died, they may be reluctant to become involved in the group. Subgroups. Providing parents of living and deceased children with the opportunity to meet separately for part of the groups meeting allows the group to take advantage of the benefits of mixed groups while avoiding some of their disadvantages. Meeting in subgroups makes it easier for the larger group to address the unique challenges of its grieving members, and it alleviates some of the potential communication problems. Separate groups. Creating a separate group for grieving parents provides them with the opportunity to talk with others who understand what they are going through. Because of their shared experience, parents in bereavement groups can talk openly about the death of their child without feeling that they must protect others from their pain. Their shared experience also allows parents to share their coping strategies with one another. In addition, bereavement groups give parents the opportunity to share their feelings and experiences and to discover that these are normal. Meeting separately also allows the group to tailor the information it provides to the unique concerns and challenges of living after a child has died. On the other hand, meeting separately prevents the parents of children who are living from being able to benefit from the wisdom and experience of those who are surviving their childrens death. Groups may also find it difficult to obtain the resources needed to establish a separate group. What should we do? There arent any quick and easy answers to this question. Spend some time talking about the issue as a group. You can use some of the questions below to guide this discussion. 1. Which approach seems most appropriate given our groups membership? 2. What are we doing now to help the grieving parents in our group?
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3. What are the advantages of our present approach? What are some of the disadvantages? 4. Given our groups membership and history, how will the advantages and limitations of different approaches affect our group? NOTE: What works best is likely to change as the membership in your group changes, so try to be flexible and willing to experiment. Characteristics of an effective bereavement group. Whether they are established as subgroups or as separate organizations, effective bereavement groups share many important characteristics. Each of these is discussed below. The group gives parents a chance to tell their story. The opportunity to talk about their child and their childs death is an important part of helping parents to accept the reality of their loss. The group gives parents the opportunity to express their feelings. Grieving parents experience a wide range of feelings, including anger, sadness, depression, guilt, frustration, anxiety, and helplessness. These feelings also include physical sensations, such as shortness of breath, exhaustion, and a rapid heart beat. The group reassures and educates parents about the feelings they are experiencing. Many parents feel that their inability to control their emotions is a sign that they are going crazy. These parents need to be reassured that the roller coaster they are on is normal. Groups should also stress the importance of acknowledging ones feelings. Unfortunately, grief is something we must pass through; it is not something that we can go around. The group provides parents with opportunities to share their coping strategies. Hearing other parents talk about what they are doing to survive the loss of their child makes it easier for the grieving parent to adjust to a world without his or her child. The group prepares parents for the fact that mourning is a life-long process. Many of us think that we can be cured of our grief and that eventually it will go away. But the reality of mourning is that we will have good days and bad days for the rest of our lives. The group reminds parents that everyone grieves differently and according to his or her own timeline. This information helps parents cope with the misguided advice they hear from others who tell them that they need to move on now. It also helps parents to be more accepting of the differences in their grief and the grief of their immediate family members.
The group addresses the informational challenges of being a bereaved parent. A bereavement group provides parents with information about what to do with their childs possessions, how to cope with the expectations of family and friends, and how to help surviving children. The group may also provide parents with information about childhood bereavement and bereavement groups for children. The group helps parents find meaning in their lives again. The safety and support found in an effective bereavement group allows parents to encourage each other to try new activities and to reinvest in their relationships with others.
Ideas for mixed groups. Although mixed groups cannot focus exclusively on bereavement issues, it is important for these groups to recognize and address some of the unique challenges that face the parents of deceased children. Many mixed groups sponsor special memorial services in honor of children who have died. These services help bereaved parents to acknowledge their childs death and to celebrate their childs life. Mixed groups can offer support to their grieving members by attending the childs memorial service, sending cards on the anniversary of the childs death, and providing the family with financial assistance to pay for some of the funeral costs. Mixed groups can also provide the parents of deceased children with a list of their communitys bereavement resources. These resources include mental health professionals who offer grief counseling services and bereavement groups sponsored by churches, hospitals, hospices, and national organizations such as The Compassionate Friends. For more information about taking advantage of the resources in your community, see Chapter 23.
(Sub)Groups for fathers

We know that women are the most active members of most mutual support groups for parents of children with cancer. There are many reasons why this may be true, but it nevertheless raises the question of what group activities might best appeal to fathers, and how groups might best meet their needs. There are some special issues that fathers of children with cancer may wish to talk about. And sometimes fathers might like to talk just with other men about some of their concerns. These issues may not be very different from the issues mothers are concerned about, but they may take a different shape for men. For instance, among the issues fathers of children with cancer often discuss with other men are: What are the special things we have had to learn as fathers regarding household and family responsibilities and our relationships with our wives and children? How have we been able to give and get help from our wives? How have we dealt with our jobs and careers? How have we asked for (or not asked for) and gotten (or not gotten) help from other men including our own fathers? How have we changed as people?
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Women tend to be prepared by their own early socialization and education to be the primary caretaker of their children and to be emotionally responsive to their families needs. Many fathers have not had this kind of early preparation and expectations. Given the ways in which most men have been socialized, it is sometimes hard for men to show their true emotions and respond to the emotions of others. These are things fathers of children with cancer may have to learn, and sometimes it is easier to do this learning with other men. In addition, it sometimes is important for fathers (and mothers as well) to talk about their relations with their spouses or partners with others who are having similar experiences. These conversations may help fathers understand how normal or common some of their experiences and reactions are. Subsequently, they may be better able to approach these concerns with their own wives or partners. Thus, it may be very helpful to men, as well as a useful recruiting device, for a group to hold some separate meetings or subgroup sessions where fathers can meet and talk with one another. It also is helpful to report the results of these sessions to the larger group of men and women.
Groups for long-term survivors

The cancer is gone. These words are cause for celebration! They also mark the beginning of a new phase in the young persons life: he or she is now a survivor. Because so few treatment programs address the social and psychological challenges that accompany a cancer diagnosis, many survivors struggle with these challenges long after they have completed their medical treatment. The social and psychological challenges they face range from loss of self-esteem and difficulty in peer relationships to discrimination in insurance and employment situations. Research has also found that long-term survivors seek medical information, ongoing medical monitoring, assistance in making the transition from pediatric to adult medical care, supportive counseling, peer support systems, community education, and legal advocacy. To help survivors access the services they seek, some parent groups establish peer support programs for long-term survivors. The opportunity to talk to their peers gives cancer survivors the support they need to reflect on their lives and to find meaning in their cancer experiences. Peer support also offers survivors the opportunity to gather and share strategies that will help them to confront the personal and social challenges that lie ahead. These challenges include both the everyday challenges of any person their age and the particular challenges they face as long-term survivors of cancer. Some of the topics most likely to be addressed in a peer support session include: school and/or work performance plans for the future (college or finding a job) living on ones own obtaining adequate health insurance making the transition from pediatric to adult health care dating marriage and intimacy concerns about the ability to have children worries about cancer recurring concerns about ones future health and the health of ones children Special groups for long-term survivors also provide a place for survivors to deal with the emotional consequences of experiencing the deaths of other cancer patients. Although survival rates for childhood cancer have improved dramatically over the past twenty-five years, there are still young people who die as a result of their illness or its treatment. Consequently, it is likely that longterm survivors of childhood cancer have experienced the death of one of their peers at some point during their treatment. These experiences often stimulate feelings of vulnerability, fear, grief, and sadness. Groups provide survivors with the opportunity to discuss these feelings and the importance of moving forward with life. While no two groups are the same, most groups for long-term survivors combine elements of recreation, informal socializing, and formal discussion. Where and how these pieces come together is up to you. Groups have different schedules, and they meet in a variety of locations. Some groups meet once a month at the treatCandlelighters Childhood Cancer Foundation
Youth groups
Some support groups for families of children with cancer have helped to establish subgroups or separate groups for the children themselves. Most of the time these youth groups are age specific, with teenagers meeting separately from younger children. In youth groups there are several possibilities for focus. Some groups, especially those for more mature young people with cancer, may have discussions and presentations that are quite like those that occur in the parent groups. Young people with cancer often want to exchange experiences and ideas regarding how they handle hair loss, friendships, the medical staff, and their relationships with their siblings and parents. Some of the most exciting and effective youth groups have undertaken special projects, such as creating a booklet or video of their own experiences for presentation to newly diagnosed children or for presentation to school groups. Other groups have been provided with special training so that young people can be peer counselors, advisers, or buddies to other young people with cancer. These kinds of activities serve several purposes at once: they give the participants a reason to talk about their concerns with one another, they give them a specific and useful project to do together, and they provide material for public educational purposes and potential fundraising campaigns. Groups for younger children with cancer may have less of a discussion focus, but they may also be able to create useful materials for others. They also can just have fun together and go on trips to special places. For much younger children (for instance, below the age of seven or eight), a play group is probably the best idea.
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ment center, while other groups schedule periodic weekend retreats that include skiing, water sports, or camping programs. These adventures are usually coordinated and supervised by professionals skilled in dealing with those young people whose physical limitations (compromised energy levels, use of prosthetics, or other medical equipment) may make participation challenging but not impossible. Groups may also establish Big Brother/Sister programs. These programs match newly diagnosed children with long-term survivors, and the results are amazing! Not only do Big Brother/Sister programs offer children on active treatment the hope of long-term survival, they also provide survivors with the chance to talk about their experiences and share their wisdom with others. Some of the benefits of these programs are illustrated in the examples on the next page. Marta volunteered for the Patient-to-Patient program ten years after she was diagnosed and treated for osteosarcoma. When she introduced herself to the other survivors participating in the program, she described her enthusiasm for being able to give something back in exchange for the care and support she received as a teenager on active treatment. Marta also talked about how difficult it had been for her to discuss the amputation of her leg with her family. For her, the Patient-to-Patient program was an opportunity to talk to others about something she had never been able to talk about before. Nick also found it difficult to talk with others while he was being treated for Hodgkins disease. He found his voice in a special group for adolescent patients and survivors. He spoke candidly about his fears and concerns, his relationship with his parents, and his difficulties at school. The chance to talk about these experiences helped Nick realize how much he had learned, and it reminded all who heard him that they are not alone. For more information about locating existing groups for longterm survivors or starting your own, please contact the national office of the Candlelighters Childhood Cancer Foundation or the National Coalition for Cancer Survivorship. Their address and phone number are included in Appendix A.
(Chesler, Allswede, and Barbarin, 1991, p. 27): Sometimes I feel bad and sometimes I feel a little jealous. I feel sad when I hear that he had all these needles and stuff stuck into him, and I get jealous when he comes home and gets all the attention and doesnt have to clean up and make the bed. The feelings associated with being the brother or sister of a child with cancer are different for every sibling. There is nothing wrong with feeling all of these emotions or none of them. Whats important is being able to share these feelings with someone who understands what being the sibling of a child with cancer is really like. For many siblings finding this someone is very difficult. A siblings friends, aunts and uncles, teachers, and neighbors may be willing to listen, but without any personal experience its hard to know if theyll really understand whats happening. Parents are likely to understand, but siblings are sometimes reluctant to talk with their parents. As one sibling explains: My parents visited the hospital daily, and I barely got any time with them. I felt that I wanted to be with them more and get more attention from them. Most of the time I was jealous or mad, but I also felt that D. deserved to be with them more than I did. I didnt say anything for a long time, because I thought I had no right to want much attention when D. was so sick. Another sibling says (Chesler et al., 1991, p. 32): It helped to talk to my parents and have them listen. But I really didnt want to go to them because I knew they were still upset. So where else can siblings go to talk about their feelings and experiences? As participants in a sibling support group, siblings can turn to each other! Membership in a special group for siblings of children with cancer has many benefits. Siblings discover that they are not alone and that there are others who experience some of the same pain and joys they do. Siblings have the opportunity to form new friendships. Many of these friendships are long-lasting and provide siblings with an important source of ongoing support. Siblings get a chance to have fun and take a break from their chores and all that worrying. Siblings find out how others have handled the challenges of being the brother or sister of a child with cancer. What do other siblings do when they feel jealous, or have to defend their brother or sister from name-calling? How do they handle it when they have to answer questions from friends and strangers? Siblings also get a chance to learn more about cancer and ask
Sibling groups
Being the brother or sister of a child with cancer isnt easy! Theres less attention from Mom and Dad, extra responsibilities at home, teasing from friends and classmates about baldy brother or slow sister, missed vacations, and crazy, mixed-up schedules for meals and bedtimes. There is also a whole roller coaster ride of emotions. Siblings may feel jealous, scared, resentful, confused, frustrated, angry, proud, lonely, guilty, embarrassed, or worried. Heres one siblings description of his emotional roller coaster
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their biggest and scariest questions, such as, Is my brother going to die because he has cancer? Can I catch it? Did my sister get cancer because of that fight we had last year when I told her I hated her guts? What do sibling support groups do? A typical meeting is a mixture of information, recreation, and discussion. This combination of work and play makes it easier for siblings to get to know one another and makes the group more appealing. If the group isnt fun and siblings see it as one more thing I have to do because of my brother or sister, they will be less receptive to the information presented, and more importantly, they will be less likely to attend the next session. A sample schedule might look something like this: 1. Warm up activity (10 minutes) 2. Discussion (30 minutes)
3. Game (10 minutes) 4. Questions and answers with the doctor (30 minutes) 5. Closing activity (10 minutes) Depending on how much time is available, you can add or subtract from this schedule. If you have more time, you might want to make and eat lunch or a snack together. Special projects. Some groups for siblings spend their time together working on special projects. These groups have made presentations to the parent group about their needs and concerns. They have also made videos that describe their experiences to other siblings, parents, and medical professionals. Sibling groups can also spend time writing articles for the groups newsletter. Box 29 contains an article that was published in the Candlelighters Quarterly newsletter after a very special meeting for siblings (Chesler, 1995).
Box 29. Siblings: Having Our Say

At the twenty-fifth Anniversary Conference of the CCCF in hot and humid Washington, DC, twelve young people aged seven to twenty-nine met to talk about what its like having a sibling with cancer in the family. In the hour we were given for a Siblings Only session, I talked briefly about my own experiences growing up and summarized some research findings on siblings experiences, and then asked everyone to share something of themselves. We talked about our families, our anger, jealousy, worries and fears, and thought about what we wanted to tell others about our experiences. In fact we made lists of things we wanted other people to know: one for parents, one for other children or young adults in our position, and one for the child who has been diagnosed with cancer. Some parts of these lists reflect anger and bitterness, but that was not the overriding feeling in the session. I hope it isnt the only message you take away. If nothing else, the issues raised here may provide you with a good starting point for discussions in your own family. When you talk to family members, say how everyone is doing. What were doing is important too. Ask how were feeling. Dont assume you know. Keep a diary if you dont want to talk to your parents. Expect that you will not get as much attention, and expect that your parents are going to be extra cautious about what your brother or sister does, who she hangs out with, etc. Hang in there. Youre all youve got for right now. Dont feel like you have to think about the illness all the time. Be understanding of your parents and stay involved. Tell someone how youre feeling. Dont bottle it up. Make sure you tell your parents how youre feeling. Go to the hospital and visit when you can. Make as many friends as possible in school.
To siblings of newly diagnosed kids:
To our siblings who struggled or are struggling with cancer:

To parents:
We know youre burdened and trying to be fair. But try harder. Give us equal time. Be tough on disciplining the child with cancer. No free rides. Put yourself in our shoes once in a while. If youre away from home a lot, at least call and tell us I love you. Inform everyone of whats going on. Tell us whats going on. Dont just sit us in front of a video about cancer; talk about it with us. Keep special time with us like lunch once a week or something. Time just for us. And if you cant be with us, find someone who can.
The world does not revolve around you. Stop feeling sorry for yourself. Not everything is related to cancer. Stop using it as an excuse for everything. Im jealous of you sometimes, but Im not mad. I know it sometimes seems like Im mad, but Im not. Dont take advantage of all the extra attention you get. Tell mom and dad to pay attention to me sometimes, too. Thanks for the free trip to Washington, DC! Thanks for the neat pen pal! Now that youre feeling better, wheres the gratitude for all those chores I did? I really admire your strength and courage. I wouldnt have gotten through your illness without you.
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Chapter 19: Keeping the Group Running Like a Well-Oiled Machine
his chapter is like a toolbox. Inside are tools to keep your group running smoothly and effectively. There are tips about how to maintain good group communication, how to make new members feel comfortable, how to make decisions, how to resolve conflicts, and how to evaluate progress and plan for the future. These tools are most effective when they are shared. Your toolbox does not belong to any one individual; it belongs to the group!
The art of communicating

Communication can be pretty complicated. Ideas and feelings have to find their way into words, words need an opportunity to be
spoken, and listeners need the ability and willingness to hear and understand what has been said. The process gets even more complicated when you add more speakers and put them in a group! But not to worry. The information in this section will give you the tools you need to make your groups communication as effective as possible. Using behavior. Although we arent always aware of it, our behavior has a significant influence on our communication with others. Box 30 describes some verbal and nonverbal behaviors that are helpful in promoting good communication.
Box 30. Effective Verbal and Nonverbal Communication

Verbal
Uses words that everyone can understand. Summarizes members comments. Uses verbal reinforcements, e.g. mm-mm, I see, Yes. Calls members by their first name. Gives information upon request. Answers questions about self. Uses humor occasionally to reduce tension. Is nonjudgmental. Clarifies members statements. Phrases interpretations tentatively to elicit genuine feedback from the person who spoke.
Nonverbal
Uses a tone of voice that is similar to the speakers. Maintains good eye contact. Nods head occasionally. Speaks at a moderate pace. Leans towards the speaker slightly.
Listening. Good communication is as much about listening as it is about talking. One of the most effective ways to improve communication is to focus on building listening skills. Here are some guidelines for effective listening. Know that what is said involves more than the dictionary definition of the words that are spoken. Meaning is also conveyed in the persons tone of voice, facial expression, body posture, and rate of speech. Put aside your own opinions and remember that you cant listen to the speaker if you are trying to prepare your response at the same time. Be patient. Listening is much faster than talking. (The average person speaks about 125 words per minute but can listen
at about four hundred words a minute.) Give the speaker time to tell his or her story and try not to jump ahead. The speakers next comment might not be what you were expecting! Avoid interrupting the speaker. Listen to all participants, not just those with whom you agree. If a speakers comment was particularly emotional or confusing, offer the person a brief summary of what you understood and ask him or her if you have understood correctly.
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Other common communication problems and some suggested solutions. The list in Box 31 doesnt cover everything, but hopefully it will give you some ideas about how to handle a few common communication problems.
Box 31. Communication Problems and Solutions

Person is monopolizing the discussion. Possible reasons: Is wordy by nature, well informed, showing off, lonely, wants attention. When they take a breath, say, Thats a good point. How do other people feel about that? Possible solutions: Ask the person to summarize what they are trying to say in one sentence. Make the monopolizer your ally. Take the person aside and suggest that the person help you bring out the quieter members of the group. Person is being aggressive and argumentative. Feels pressured or upset, feels ignored or misunderstood, has an aggressive personality. Possible reasons: Possible solutions: Avoid getting angry. Summarize his or her points. Ask the group for feedback on the persons comments. Talk to the person privately. Person is criticizing others and insists on doing things his or her way. Needs power, believes that his or her way is best, is controlling by nature. Possible reasons: Possible solutions: Ask other members for their input. Talk to the person privately. Person is responding negatively to new ideas: Yes, but . . . Feels threatened by change, such as new people or new ideas. Possible reasons: Encourage the person to elaborate on their concerns and then ask the group how these Possible solutions: can be addressed. Two people are having a side conversation. May be a personal issue, may find it difficult to speak in front of the group, may find it difficult to Possible reasons: wait their turn to speak. Direct a question to one of the people involved and invite him or her to share their thoughts with the Possible solutions: group. Intervene and remind them that only one person has the floor. Encourage people to use a note pad if they are concerned about forgetting their thoughts. Person rambles and gets the group sidetracked. Wants attention, loses his or her train of thought. Possible reasons: Possible solutions: Ask the person to summarize his or her comments. Redirect the conversation by asking another group member for his or her ideas on a more topical issue. Person is very quiet and rarely contributes to group discussions. Shy by nature, distracted by some other issue, feels uncomfortable speaking in front of a group, feels Possible reasons: nervous about jumping into a conversation, waiting to be acknowledged. Look for cues that the person is ready to speak (sitting at the edge of the chair, clenched fists, Possible solutions: a change in their facial expression, and/or a sudden deep breath) and invite him or her to join the discussion. Talk to the person privately.
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Welcome to the group! Orienting new members

Providing new members with an orientation is an important part of making them feel welcome and at home in the group. New members need information about the groups leadership, activities, when and where it meets, and what will be expected of them as members. New members should also have a copy of the groups mission statement and the groups guidelines (see the examples in Chapters 12 and 13). A list of current members names and telephone numbers will also increase new members sense of belonging. But the most important thing you can give a new member is the chance to find out who the other members of the group are. Help new members get to know you by: introducing yourselves before the meeting wearing name tags at new members first few meetings seating yourselves so that old timers are intermingled with the newcomers offering new members a ride to first few meetings calling new members in between meetings to offer support and answer questions
Be creative! What you come up with may surprise you.

Source: Adapted from Hill, 1984.
Establishing your priorities. Now that youre drowning in ideas, its time to establish some priorities. As you read through your list of ideas, ask yourselves the following questions (Checkoway, n.d., p. 25): Which ideas are most likely to help us accomplish our goal? Which ideas will benefit the most people? Which ideas are most likely to succeed? Which ideas have the most support? Which ideas are possible given our available resources?
Decisions, decisions
In some ways, groups can be thought of as the sum of their decisions. Every time a group makes a decision, it takes another step in its development. Decisions shape everything from when the group will serve its refreshments to whether or not the group will decide to incorporate and file for tax-exempt status. Because of their impact on your group, it is worthwhile to think about and discuss the way your group makes its decisions. Different decision-making styles involve different numbers of people and require different levels of agreement. An executive decision is made by one person on behalf of the group. A majority decision is made by voting and the option with the most votes wins. Consensus decisions involve everyone and require that all agree on the action to be taken. Each of these options has advantages and disadvantages. These are listed and described in Box 32.
Getting Ideas
One of the most important ingredients in making an effective decision is knowing what all your options are. The following techniques will help you make sure youve got all the options on the table. Brainstorming exercises are a fun and creative way to think of ideas. Before you begin, make sure everyone has a clear understanding of the problem. Then ask members to share all their ideas. Members should share their ideas one at a time without stopping to discuss or critique them. As members share their ideas, write them down. The goal is to come up with as many ideas as possible and to let peoples ideas flow from one another. When youve squeezed every last idea out of yourselves and written them all down, you are ready to begin the process of discussing and evaluating them. The advantage of this process is that many ideas that might be self-censored or cut off by others can be discussed and explored. Round Robin exercises are another way to trigger peoples ideas. To do a round robin, give everyone a piece of paper and ask them to write down as many ideas as possible. When everyone has finished writing, ask members to take turns reading the ideas from their lists. As people share their ideas, write them down on a large sheet of paper, but resist the temptation to discuss them. When all the ideas have been recorded, you can begin your discussion.
Source: Adapted from Checkoway, n.d., p. 24.
Box 32. The Pros and Cons of Executive, Majority, and Consensus Decisions
Advantages
Executive Majority Fast
Disadvantages
Members may not support the decisions Voting is a familiar process Issues become polarized Works well whether the group is large or small Fast Turns the decision into a win-lose situation Those who voted for the other option may not be committed to the decision Takes a long time Progress can be blocked by one person More effective in a smaller group Getting everyone to agree may require so many compromises that the final decision seems watered down
Consensus Members feel committed to the decisions that are made Options are usually discussed more thoroughly
Mix n match is another way to develop ideas. This exercise is designed to help you see solutions in a different way. Ask the group to think of ways in which old ideas can be modified, expanded, reduced, rearranged, or combined with another idea.
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Source: Adapted from Crowfoot et al., 1982, p. 35.
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As you weigh the relative merits of these decision-making styles, you should also consider the type of decision you are making. When deciding on a relatively small issue, making the decision quickly may be more important than seeking consensus. On the other hand, when making decisions that are likely to have a significant impact on the groups development, it is probably worthwhile to spend the time needed to make sure that everyone feels comfortable with the decision. It also helps to consider the stage of your groups development. Early on, a group can benefit from using a consensus approach to decision-making. The members will get to know each other through the process and will develop a sense of sharing and commitment. Later on, your group may find it useful to turn to voting when a consensus cannot be reached. The danger of using voting in the early stages of the group is that it can result in a split that would lessen members commitment to each other (Crowfoot et al., 1982, p. 36). Using the guidelines in Box 33 for making decisions will help you maximize the advantages of each of the decision-making styles.
Dealing with conflict

As uncomfortable as it feels, conflict is an inevitable and completely normal part of any group. It is definitely not a disaster or a cause for panic. In fact, when handled well, conflict can help your group become more effective. Theres nothing like a good conflict to help you figure out what your groups priorities are! Groups that avoid conflict lose their opportunity to find out whats on peoples minds, and they may send their members the message that harmony is valued over honesty. What causes a conflict? Conflicts can arise for a variety of reasons. Sometimes they are the result of disagreements within the group about how group funds should be spent; other times they stem from outside organizations or people who put pressures on the group to have certain programs or operate in certain ways. Conflict may also be the result of unrealistic expectations. Members may have unrealistic expectations of one another, the group may have unrealistic expectations of some outside agency, or an outside agency may have unrealistic expectations for the group. Conflict also arises as a result of changes in members needs. For example, veteran members of the group may wish to focus the groups energy on its advocacy efforts, while new members may be more interested in maintaining the groups focus on providing emotional support. To prevent the group from being divided into competing factions, the group needs to address the potential conflict and search for a way to meet all members needs (see Box 34).
Box 33. Guidelines for Making Decisions

1. Make sure that everyone involved in the decision has a clear understanding of both the situation and the decision that needs to be made. 2. Delegate the decision to the smallest group possible and then have the larger group ratify it if necessary. 3. Set a timeline for making the decision. 4. Make sure that everyone involved in the decision has access to adequate information. If you think you need more information, take the time to get it. Ask another group leader how XYZ impacted their group, call the national Candlelighters office, ask a member of the hospital staff, talk to anyone who has the information you need! 5. Agree on the kind of information you will need to make this decision. 6. Consider all of the possible options. Use a brainstorming or round robin exercise (like the ones described in the section called Getting Ideas) to help you think of as many ideas as you can. The more options you discuss, the better your final decision will be. 7. Deal with interpersonal issues openly so that they do not interfere with the groups ability to make a decision. 8. Try to make decisions that satisfy everyone. Watch out for members who are agreeing with the rest of the group simply to avoid conflict. 9. Once a decision is made, do your best to make sure that it is carried out. 10. Be flexible and willing to revise or postpone decisions if circumstances change.
Source: Adapted from How to Start a Self-Help Support Group, 1984, and Crowfoot et al., 1982, p. 37.
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Box 34. A Recipe for Resolving Conflict

Ingredients: a generous helping of willingness to listen, a lot of willingness to consider the possibilities, a clear understanding of the problem, a dash of good luck, and a sprinkle of good will. Step 1: Define the problem. Ask each party to answer the following questions: How do you see the conflict? If you could have exactly what you want, what would that be? Step 2: Give each side an opportunity to finish their explanation without interruption. Step 3: Encourage everyone to make I statements and to separate the people from the issue or problem being discussed. Step 4: When the explanation is finished, ask the other side to summarize what they have heard. Step 5: Ask the group to consider possible solutions. Look for a solution that will give both parties what they want. Step 6: Agree on the criteria you will use when choosing the solution. Step 7: Decide on a course of action. Do not agree to a solution that cannot be realistically achieved. Step 8: Make specific plans to implement the solution. Step 9: Set a time to check back with one another so that you can make sure the solution is really working. Step 10: If the present solution is not working, be willing to try again.
Source: Sanford, 1984, p. 4.
Box 35. Tips for the Chairperson

1. Before the meeting, arrange to have someone address each item on the agenda. 2 Encourage the expression of various viewpoints. The more important the decision, the more important it is to have all pertinent information (facts, feelings, and opinions) on the table. 3 Expect differences of opinion. When handled well, they can contribute greatly to creative solutions. Dont let discussion remain between two people. Ask other people for their comments. After all, it is the group that needs to make the decisions and carry them out. As much as possible, hold people to speaking for themselves only and to be specific when they refer to others. Not: Some people say . . . , We all know . . . , They would not listen . . . . Even though this is scary in the beginning, it will foster the building of trust in the long run. Keep looking for minor points of agreement and state them. It will help build morale. Encourage people to think of fresh solutions as well as to be looking for possible compromises. In tense situations or when solutions are hard to reach, remember humor. When you test for agreement, summarize everything you think people agree on in the form of a question. For example, It sounds like we agree on X, Y, and Zis that right?
Conducting a business meeting

Conducting an effective business meeting is different from running a sharing session. Getting tasks accomplished in a mutual support group involves finding a balance between efficiency and encouraging member participation. Encouraging wide participation helps the group benefit from being able to hear everyones ideas. On the other hand, if theres too much discussion about one issue, the group cant get things done and members are likely to become impatient. None of us like to spend all of our time in meetings where nothing gets done! The person running the meeting (the chairperson) plays the most important role in making sure that there is a good balance between efficiency and participation. Box 35 offers some tips for the chairperson.
Source: Adapted from Crowfoot et al., 1982, p. 33.
Using an agenda is one way to find this balance. An agenda is a list of the activities you hope to accomplish during the meeting. Once everyone at the meeting understands and agrees on the agenda, it can then serve as a roadmap for the meeting. Because an agenda lets everyone know what needs to be done, it helps members keep their discussions focused. A typical agenda is described in Box 36.
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Box 36. Sample Agenda

1 2 An Opening: Something to gather people and concentrate their thoughts on the present. Agenda Review: Its a good idea for everyone to have a copy of the agenda or to write it up on large sheets of newsprint so that everyone can see it. By reviewing the agenda, the chairperson can give people a chance to make any needed changes. It also reminds everyone of what they need to accomplish. Main Items: If more than one item needs to be dealt with, it is important to make priorities. a. If at all possible, start with something that can be dealt with reasonably easily. This will give the group a sense of accomplishment and energy. b. The more difficult items or those of most pressing importance should be next. If there are several, plan to have quick breaks between them to restore energy and attention. c. A big item might be broken into several issues and discussed one at a time to make it more manageable. Or it might be helpful to present the item with background information and clarification, then break into small groups for sharing ideas and setting priorities, and then return to the main group for discussion. d. Finish with something short and easy to provide a sense of hope for the next time. 4 Follow-up Plans: Be clear with each other as to what tasks need to be done and who will do them before the next meeting. Also, set the time and place for the next meeting. Evaluation: Evaluating the meeting will give people a chance to think through what happened, express their reactions to the meeting, and make suggestions that will improve future meetings. Closing: This can be as simple as thanking everyone for their hard work. It helps the meeting end on a positive note.
Evaluation
Evaluating the groups progress is another important step in keeping the group running smoothly and effectively. Here are some of the benefits of doing regular evaluations. Evaluations provide group members and leaders with an opportunity to find out what is going well for the group and what needs to be improved. Knowing your groups strengths and weaknesses will prevent your group from taking on more or less than it can handle. Evaluations are especially helpful for groups involved in fundraising. Donors want to know how their money is being spent and to see evidence of your groups effectiveness. Including plans for evaluation is also an important step in writing a good grant proposal. It literally pays to do an evaluation! Evaluations help groups gain the respect and trust of the professional community. People trust those who hold themselves accountable for what they do. Most importantly, doing an evaluation will help your group meet the needs of its members. The needs of a group change as members personal situations change and as new members are added to the group. Doing an occasional evaluation will give you an opportunity to see how the groups needs have changed, and it will give you the information you need to respond effectively.
Source: Crowfoot et al., 1982, p. 28.
Evaluation options. Your group has many options when it comes to doing its evaluation. Idea #1 Use an evaluation form like the one in Pullout 8. You can adapt this form to meet the specific needs of your group. For example, if you havent had a guest speaker, you dont need to ask about the effectiveness of those meetings. On the other hand, you can ask members if they would like to have a guest speaker in the future. Include space in your questionnaire for members to make suggestions and specific comments about the areas they are evaluating. Idea #2 Do another needs assessment, using the forms in Chapter 12. Compare the results with those of previous needs assessments. This is an excellent way to see how members needs and interests have changed. Idea #3 Ask a member of the group to follow up with individuals who have stopped coming to group meetings. Understanding parents reasons for not coming may help you see some areas for improvement. For example, parents may be unable to attend meetings because they cant get a babysitter. If this is the case, consider providing childcare during the meetings.
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Pullout 8. Group Evaluation Form

Thank you for taking the time to complete this form. We need your feedback to help us improve what we arent doing well and to continue the things that work.
INSTRUCTIONS:
Please rate each of the items in the table. A rating of ONE indicates that you STRONGLY DISAGREE with the statement. A rating of FIVE means that you STRONGLY AGREE with the statement. If you have specific comments or suggestions about a particular item, please write them in the comments column. Item I think the overall effectiveness of our group is excellent. I feel as though the group meets my emotional needs. The group provides me with the information I need about my childs cancer. I enjoy the groups social events. I think that there should be more social events. I feel satisfied with the role that professionals play in our group. I think the group should be involved in efforts to change aspects of the health care system. I have enjoyed and benefited from the guest speakers. I think we should have more guest speakers. I feel as though I can speak openly and freely during group discussions and that people are interested in listening to me. I feel as though everyone in the group has the opportunity to speak. I think that our groups discussions are productive and feel that I benefit from them. I like the way the facilitator leads our discussions. I think our leader(s) is (are) doing a good job. I think that our leader(s) is (are) committed to the group. I feel comfortable with the way our group makes its decisions. I am very happy that I joined this group. Strongly...Strongly Disagree.....Agree 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 Comments
The best things about our group are: ________________________________________________________________ _________________________________________________________________________________________ _________________________________________________________________________________________ The things about our group that I would like to change are: ________________________________________________ _________________________________________________________________________________________ _________________________________________________________________________________________
Source: Adapted from Candlelighters Canada Parent Support Group Resource Manual, n.d., pp. 156-57. You Are Not Alone
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Making the most of your evaluation. Now that you are swimming in the information collected from group members, it is time to put what you have learned to work and make plans for the future. Begin by reviewing the results of previous needs assessments and your current mission statement. Compare these to the results of your evaluation and make a list of the things that have changed. Then ask yourself: Do the groups goals and objectives still seem appropriate? How can our current goals and objectives be changed so that they reflect the changing needs and interests of group members? Next, make a list of all of the groups activities, services, and programs. Compare these to your new goals and objective and ask yourselves: What improvements do members want to see? Are there programs we dont need any more? Are there programs we should add?
What materials and resources do we have available to make these changes? Will we need additional resources? What will we do to get the resources we need? What obstacles might prevent us from being able to make these changes? How can we address these obstacles?
The answers to these questions will help you develop specific plans for the future. These plans will give your group a sense of direction and help you meet members needs more effectively. As you make plans, take the time to discuss alternatives and remember that there may be more than one way to achieve the groups goals. Make plans as specific as possible and be very clear about who is responsible for each action. Consider using Pullout 9, the strategies worksheet, to help you.
Pullout 9. Strategies Worksheet

Action
Who is Responsible Who will Assist Phone # Phone #
Materials Needed
Cost
Completion Date
Evaluation Plans
Source: Adapted from handout at Candlelighters Group Leaders Workshop, August 1996.
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Chapter 20: Fundraising

groups decision to raise money should be based on its goals and purpose. Some groups can achieve their goals without raising or spending any money. For example, a group whose purpose is to help families as they face the emotional challenges of childhood cancer can meet once a month in a members home to share their experiences without needing any money. Other groups pursue goals that require access to funds. Groups raise money to pay the costs of: printing and mailing their newsletter providing transportation services to families printing brochures and stationery helping families pay bills providing families with meals and groceries reimbursing families for hospital parking expenses helping families with funeral expenses creating scholarship funds sending kids to camp hosting holiday parties reimbursing families for the cost of prescriptions that are not covered by their insurance company funding staff positions, such as social workers and child life specialists sponsoring childhood cancer research and much more! For groups interested in sponsoring programs like these, fundraising is an important skill. This chapter will provide you with some of the information needed to conduct a successful fundraising campaign.
Getting your first hundred dollars

If your group is starting off without any money, dont panic. Good old-fashioned car washes, bake sales, raffles, and/or yard sales are a great way to earn your first hundred dollars. The group can also make a verbal presentation or a written request to a local club interested in childrens charities and/or family organizations. These local clubs include the Rotary, Kiwanis, Garden Clubs, Womens Clubs, and Collectors Clubs, and they are usually willing to support an organization in increments of $250, $500, and $1000. As a third option, you might consider asking members of the groups board of directors to contribute some start-up funds. Using your start-up funds effectively. Using your start-up funds to pay the filing fees associated with incorporating and filing for nonprofit status will provide the group with some of the tools it needs to begin bigger and better fundraising projects. Organizations, foundations, and individuals are more likely to make a donation to the group if they know that this donation is tax deductible. (A description of the steps involved in filing for nonprofit status is included in Chapter 17). Printing stationery, brochures, and a newsletter is also a wise investment. These tools will add to the groups credibility and make it easier for you to get the word out about your organization.
Fundraising tools and strategies

Experts agree that a clearly defined mission statement is an essential part of a successful fundraising campaign. Potential donors need to know who you are, what you do, and whom you serve. For more information about writing a mission statement, review Chapter 12. Another important tool in effective fundraising is a case statement. A case statement is a written document used in capital campaigns and when seeking major gifts or funding from foundations and corporations. A good case statement includes the following information: 1. a brief description of the groups history, 2. the reasons for the groups existence, 3. the groups mission statement, 4. a summary of the groups accomplishments, 5. a description of the groups long-term goals and its plans for achieving them, and, most importantly, 6. a description of how your group benefits the individuals and community it serves. Your group may want to try one or all of the fundraising strategies described here. Getting things for free! Although it may sound surprising, fundraising isnt always about raising money. Groups can get a lot of the things they need by asking businesses, organizations, and professionals to donate their expertise and materials. For exam-
Before you start

Before you get started on any fundraising projects, the group should talk about how it wants to spend the money it raises. Agreeing on your goals and programs now can save the group from future disagreements about how to spend the groups funds. It also can be a talking point when soliciting donors. The group should also designate someone who is willing to handle the groups finances. This person will be responsible for keeping an accurate record of the groups income and expenses and for making regular reports to the rest of the group. In addition, the group should make decisions about who will be responsible for deciding on the annual budget, who can disburse funds, and who will authorize these disbursements. Many groups set up a system in which two signatures are required on each check. Finally, the group also needs to open a bank account. If possible, find a bank willing to waive the service charges for nonprofit organizations.
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ple, businesses, departments of public health, social service agencies, and civic organizations may be willing to donate the use of their office space, telephones, clerical staff, computers, copy machines, and/or fax machines. These organizations may also be willing to donate some of the materials you need. For example, a local restaurant could be asked to donate the refreshments for a group-sponsored conference or holiday party. Local printers and office supply companies may be willing to donate paper and printing supplies for the groups newsletter and brochures. Professional services are another valuable donation. Clerical assistance for large mailings and newsletters is a service that may be volunteered as a means of cutting costs. Legal assistance in filing for tax-exempt status may be donated by an accountant or lawyer who is interested in the group (for information about this process, review Chapter 17). There are so many possibilities you just have to ask. But how do you ask? Approaching people in businesses or agencies is an opportunity to explain the group and its purpose. Your belief in the benefits of the group is your strongest selling point. People are definitely attracted to enthusiasm and a good cause. It is also helpful to let the prospective donor know that the group is a volunteer effort, and that many volunteers and other members of the community are helping in a variety of ways. Working with a sponsoring agency. Some groups receive all the funds they need from a sponsoring agency (such as the American Cancer Society) or treatment center. While this type of arrangement can certainly benefit the parent group, it also has the potential to cause some problems. For example, problems can occur if the group is interested in offering programs and services that the sponsoring agency is unwilling or unable to fund. The sponsoring agency may require that any money that the group raises for these additional programs be given to the sponsoring agency, who then decides how these funds will be spent. Given this potential for conflict, it is important for groups to talk with potential sponsors about any restrictions on fundraising and expenditures before entering into a formal arrangement. Sponsoring a fundraiser. This is where you can let your creativity run wild! Parent groups are constantly thinking of new fundraising activities. Traditionally, many groups have focused their fundraising efforts on selling things. Groups have garage sales, craft bazaars, bake sales, and book sales; they sell T-shirts, cookbooks of their favorite recipes, bumper stickers, and greeting cards, notepaper, and calendars with designs made by the children. Groups also sponsor a wide range of events. They have car washes, telethons, recycling drives, bingo, and auctions and raffles with donated prizes. Parent groups also raise money by selling tickets to special events. These events include dances, casino nights, tennis and golf tournaments, talent shows, fashion shows, and various benefit parties and performances. Other popular ideas include run-a-thons, dance-a-thons, and bike-a-thons; you just decide on the activity and then get sponsors who are willing to pay the participants for their accomplishments, for example, for every mile they ride their bike or for every hour that they are on
the dance floor. The possibilities are as limitless as your imagination. Listed in Box 37 are some of the fundraising ideas that were presented at a recent workshop for group leaders sponsored by the national CCCF (several are from Candlelighters of Brevard). (For more information about these workshops and the national CCCF, see Chapter 4.)
Box 37. Fundraising Ideas

1. A Dealership Challenge. Write letters to the car dealers in your area, asking them to donate a certain dollar amount for every car they sell on a particular day. (A sample letter is included in Appendix C.) Try to create a sense of competition among the dealers by challenging them to donate more than their competitors on each car. Although some dealerships may choose not to participate, they are often willing to send in a donation. Once you send the letters, follow up with a phone call and advertise the event as much as possible. After the event, be sure you thank everyone who participates. 2. Mothers Day Tea. Ask members of the group to send out imaginary tea party invitations with a tea bag and a donation card. All you have to do is address the invitations and mail them out. (A copy of the invitation is included in Appendix C.) 3. Kids Helping Kids Fashion Show. Although this idea requires a little more work, it has been very successful. The models for the fashion show are all children with cancer and their parents and siblings. Once youve recruited your models, the next step is to find a location for the event. It should be big enough to accommodate seating for the audience and dressing rooms for the models, and ideally the cost of renting the space should be donated. You will also need to find a department store willing to provide clothing for the event and a restaurant willing to provide food. Additional activities include arranging a time for fittings, choosing music for the show, finding a master/mistress of ceremonies, choosing decorations, and selling the tickets. The key to doing this fundraiser successfully is planning ahead and having lots of volunteers who are willing to help you. The more people you have to get the work done, the easier everyones job will be. 4. Grocery Share Cards. At least one group has arranged with a local grocery store to create special share cards, which are given to group members and their family and friends. When shoppers use these cards, one to two percent of each sale is donated directly to their group. These cards allow people to support the groups programs and services without having to spend any additional money.
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Some helpful hints

Organizing a successful fundraiser takes a lot of work. The advice below will make organizing and carrying out your fundraising activities as easy as possible. Set up a fundraising committee who will be responsible for planning the event. This committee needs co-chairs with strong leadership skills and members who are dedicated and dependable. Ask members of the fundraising committee to volunteer for particular planning tasks. For example, someone can volunteer to do all of the pre-event publicity, another person can work on printing programs for the event, and others can collect prizes for the auction and write the thank-you notes as donations come in. Teamwork is the way to go! Involve as many volunteers as possible. Get any necessary permits. Contact the local police and fire department if you think their support services might be needed. Ask people to donate as much of the materials and equipment as they can. The less money you have to spend to organize the event, the more money you can raise for the group. Publicize the event in the newspaper and on television and radio. (For more information about working with the media, see Chapter 21.) If youre selling things, keep plenty of change on hand and have one person be in charge of the cash box. Keep records of all income and expenditures. Always thank your donors and volunteers! Requesting donations by mail. Many groups raise money by sending letters requesting funds to their list of potential donors. This list is usually made up of names that have been gathered by friends and associates from other lists (church directories, school directories, womens groups, professional organizations, etc.). Letters should include a summary of the groups accomplishments and its plans for the future. Letters may be sent at any time, but many groups chose to send their letters between November and February. Letters sent in early November catch donors in the holiday spirit. Letters sent in January and February find donors as they are working on their taxes and wishing that they had made more donations. Groups also send out requests for funds as they celebrate their fifth, tenth, and fifteenth anniversaries and other landmark events (graduations, weddings, births). Donations from groups and organizations. The group should also try to get donations from support agencies, treatment centers, civic groups, sororities/fraternities, and religious organizations. Think about the links that members of your group have with other people and organizations in the community. The companies that parents work for and the churches and organizations they belong to are all potential sources of a donation. Sometimes these groups and organizations will make the group its charity and donate all of the money that it raises to the group with no restrictions on how the money is spent. Other times
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these groups and organizations will donate funds for a specific project, such as a wish-fulfillment program or a scholarship fund. When seeking donations remember: Ask in person. Its easier for people to ignore a letter than it is for them to refuse a personal request. Be clear and specific about the groups needs. Donors are interested in giving for a specific purpose. Keep a list of all donors. People who have made donations in the past have demonstrated their interest in the group and its goals. Dont forget to thank people promptly and give them credit whenever possible for every donation of time, material, or money (unless they have indicated that they dont want public acknowledgement). Grants and foundation funding. If the group is seeking a large amount for a special project, you will probably want to apply for a foundation grant. Foundations are created to provide funding for charitable organizations. Each foundation has guidelines regarding the kinds of charities and projects they are interested in funding. Before you apply to a foundation for money, find out what their interests are and make sure that they match your own. Ask the foundation for its informational brochure and an annual report. This information will tell you what kinds of grants they have given over the past year, and it may also include details on the focus of the grants, the types of recipients, and the amounts that were awarded. Also be sure you ask for written guidelines for submitting proposals, including the desired format and the deadlines. The foundations that are most likely to fund groups for families of childhood cancer are those that support children and youth, social services, health programs for children and youth, education, community outreach, and general purposes. Some of the organizations most likely to provide funding include the United Way, Junior League, Hospital Ladies Auxiliaries, Rotary Clubs, and Elks. You can get a list of foundations from The Foundation Directory (1999) (indexed by state), available at most public libraries, by Internet at http://www.guidestar.com, or by calling the Foundation Center at 1-800-424-9836. You can also find out about foundations in your area by looking at a state-by-state version of The Foundation Directory, by searching the white pages of your telephone book, other charities newsletters, newspapers, annual reports, and programs from prominent events, or by calling the local library. Other valuable sources of information and assistance about obtaining grants are the offices of development at the nearest community college or university. Each of these institutions will have staff members who can suggest strategies, provide technical assistance and knowledge of local resources, and critique grant proposals. Additional sources of information include: Federation for Children with Special Needs 312 Stuart Street, 2nd Floor Boston, MA 02116
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Grantsmanship Center 1031 South Grand Avenue Los Angeles, CA 90015
Submitting a formal proposal. Whether you are requesting funds from a foundation or a company, you will need to submit a formal proposal. To be successful this proposal should include elements detailed in Box 38.
Box 38. Elements of a Formal Proposal

A cover letter signed by the groups leader that summarizes the major components of the proposal. If possible, use the groups letterhead. A program description, which explains: (1) why the program is necessary (provide evidence to document the need for the program), (2) how the program will be carried out (provide a timeline of the specific activities involved in achieving the projects goals and state exactly who will do what and when), and (3) how you will measure and evaluate the programs success. Keep the goals of the foundation in mind as you write this section and be clear about how the goal of the project matches the foundations goals. Use this section to create a sense of urgency and to tell the donor how important your program is to those it serves. A detailed budget for the project, including salaries, office expenses (rent, phone, computer and copying equipment, office supplies, postage, and printing), materials, etc. General information about the organization, its mission, and history. Reinforce the request by mentioning services the group provides and other programs that the group has carried out successfully. You may also want to include a pamphlet or brochure about the group in this section. A description of the groups organizational structure. Name all of the leadership positions and committees and list the members of the groups board of directors if there is one. Also state the qualifications of the people who will be carrying out the proposed project (a parent does not need professional credentials to be qualified, but the proposal should justify how parental experience is in itself a qualification). If you plan to hire people for the project, provide a job description for these positions. The organizations current annual budget. List the costs of running each of the groups programs and the groups overhead costs, e.g. telephone, equipment, insurance, etc. A list or current and future funding sources (this may be optional). A copy of 501 (c) (3) approval. Recent financials. These are records of the groups income and expenditures. List the sources of each donation received and the reason for each expenditure. A statement that no change has occurred in exempt status or the organizations mission (this may be optional). A recent newsletter and photographs of group events and activities. Letters of recommendation from qualified professionals, local public agencies, and/or community organizations. These letters should indicate the authors willingness to work with the group and their support of the groups goals (optional). An appendix of group materials, such as newsletters, flyers, catalogs from parent libraries, and so on.
Successful proposals must be easy to read. Make sure your materials look clean and crisp and avoid using small type. Also be sure you take the time to critique and proofread your document. Ask yourself how you would respond to the proposal if your were the grant officer, and definitely double check for spelling errors! Last but not least, be sure that the proposal is turned in on time. If a potential donor denies your first request for a donation, dont get discouraged. Foundations and donors expect to be asked again. Their denial may be an attempt to find out how serious you are and whether or not your organization is really capable of doing the things it says it will do. Donors are attracted to success, dedication, and persistence, so dont give up! Corporate grants. National and regional companies are another potential source of funding. Many companies are interested in funding special projects and charities and have a special office or committee to oversee the awarding of grants. To solicit these funds, the group needs to submit a proposal. (We have
included a corporate proposal submitted by Candlelighters Childhood Cancer Family Alliance in Appendix C to give you a better understanding of what these proposals look like.) To find out more about the funding opportunities at a particular company, call to ask for specific information. Remember to get the name, title, and address of the person in charge of overseeing funding requests. Also be sure you get a copy of the companys guidelines for funding requests. Some companies also have corporate grants, an employee matching funds program. In such programs, when an employee decides to make a donation to the charity the company matches the donation, so that the charity receives twice as much money.
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Seeking repeat donations

Repeat funding is critical to the success of many organizations, but donors should not be taken for granted. An attitude of entitlement is a real turn-off. Charitable giving is optional, and no one owes a charitable organization a donation.
For more information

Local universities and community colleges offer continuing studies programs that include courses on fundraising for nonprofit organizations. Additional information is also available from the National Society of Fundraising Executives. Other resources include:
Thanking your donors

Fundraising experts agree that you should thank donors seven times. Although this may sound like overkill, showing donors your appreciation is an important part of maintaining their interest in your organization. Include a thank you in your initial request for funds, and thank donors again during any subsequent phone calls. Send donors an official thank-you note after you receive a donation. Include the donors name in your newsletters. If you print programs for a special event, include the donors names on the program. You can also thank your donors by sending them a piece of the childrens artwork. Lastly, you can make arrangements to have a member of your group thank the donor in person. Using these ideas, it is easy to thank a donor seven times without being redundant or insincere.
National Center for Nonprofit Boards

2000 L Street, NW, Suite 510 Washington, DC 20036-4907 (202) 452-6262 This organization provides training publications.
The Chronicle of Philanthropy

P.O. Box 1989 Marion, OH 42206-2089 (800) 728-2819 This organization provides information using a newspaper format.
The Foundation Center

79 5th Avenue/16th Street New York, NY 10003 (800) 424-9836 This organization provides fundraising directories
Box 39. Donation Thank You Letter

(Date) (Donor name) (Title)(Company) (Address) Dear (Donor Name), On behalf of (CCCF Group name), I want to thank you for your generous donation of (Amount). This year in the US, over 12,000 children will be diagnosed with cancer and 1 in 900 young adults between the ages of 15 and 45 will be a survivor of childhood cancer. As you know, our mission is to educate, support, serve and advocate for children with cancer, their families, survivors of childhood cancer and the professionals who care for them. Through your support you are helping us meet these critical goals. The Internal Revenue Service has determined that (CCCF Group name) is a non-profit, tax-exempt 501(c)(3) organization. I certify that no goods, services or memberships were received in exchange for your contribution. As a result, your donation is 100% tax deductible to the extent provided by law. Again, thank you for choosing to support (CCCF Group name) and the littlest victims of cancer. Best regards, (Staff or representative) (Position) (CCCF Group name)
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Chapter 21: Reaching Out
he more people know about the groups purpose and activities, the more the group will benefit. Local businesses and organizations will support the group, fundraising activities will be more successful, and, most importantly, parents of children who have been newly diagnosed with cancer will know that help is available. So where do you start? What can you do to tell people about your group, and how do you do it? The information in this chapter will introduce you to some of the many ways you can tell the world about your group. We will talk about working with newspapers, making announcements on radio and television, and even about getting on the World Wide Web!
Working with the media

The media include newspapers, television, and radio. The best way to reach large numbers of people and raise community awareness about childhood cancer and your groups activities is through the media. Working with media successfully takes perseverance. It is not as difficult as many people think, but it does take a lot of time and effort. Developing a list of media contacts. A good list of media contacts is an extremely valuable tool. Such a list should include the names of the news and feature editors at the local newspapers. Your list should also include the names of the news editors at the local television and radio stations. And dont forget about the editors of institutional newsletters for the hospital and the local school system. Their circulation may be smaller than that of general news media, but their readers are an important audience for your groups message. It also helps to know which reporters do stories about health issues, childrens issues, and community organizations. These assignments may change frequently, so be sure you update your list regularly. Where do you get this kind of information? You can start by calling the news organization and asking. Note the names of reporters and newscasters when you see stories on subjects of interest to the group. You can also ask a professional in public relations for advice. (For more information about getting advice from professionals, read on.) Once you find out who covers the stories youre interested in, try to get to know them personally. You can start by calling a few of the reporters and editors on your list and asking to come by and introduce yourself. Tell these people about your organization and what it does to help families of children with cancer. Ask them how you can help them develop stories. Find out how much notice they need of your events and whether or not they would be interested in interviewing members of the group. Getting assistance from professionals. Because so few of us have experience working with the media, it helps to talk with professionals. While it is possible to develop effective public relations campaigns without it, professional advice can save time and
increase your chances for success. For example, familiarity with the personalities of local editors and reporters and the stories they are most likely to pursue will help you get your story covered. Some of the people you might ask for advice include the public relations staff at the hospital, large local employers (especially public utility companies), and community organizations such as the United Way. Call these organizations and ask for the person in charge of public relations. Then ask that person if they would be willing to meet with you. Youll almost certainly get some good advice, and you might find that you have a part-time volunteer. Types of news stories. Basically, there are two types of news stories: hard news, which conveys information about an event or happening; and soft news, which is about an interesting subject or organization but is not directly tied to any particular event. What qualifies as news varies widely from one community to the next and even from one news organization to the next. Major newspapers in the larger cities rarely cover activities or programs of local organizationsthere are just too many of them. Daily papers in smaller towns or weekly papers oriented to specific communities are more likely to cover community events. Target your efforts accordingly. Calendar announcements. Many newspapers and magazines have calendar announcements of upcoming events. Publicize your groups events by sending a short announcement with the time and place of the upcoming event to the relevant department of the publication. Preparing a press release. Groups write press releases to tell people about events they are sponsoring. These events include candlelighting ceremonies held in honor of Childhood Cancer Awareness Month, the opening of a summer camp for children with cancer, fundraisers, workshops, and presentations by guest speakers. Some groups may also choose to write press releases about events held by other local organizations that donate money to the parent group. This kind of press release is a way of thanking the supporting organization and is a good source of publicity for the parent group. Press releases present basic information about events that have happened or are scheduled to happen. Start with a headline that summarizes the main point of the release and then make sure you cover the five wswho, what, when, where, and whyin the first paragraph. You should also include a description of the group and its involvement in the event, but keep it brief. A good press release also includes a quotation about the event from someone in the group. In addition to these guidelines about the content of the press release, Box 40 provides guideline for the format of a press release.
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Box 40. Writing a Press Release

1. Write the press release on the groups stationery. 2. Print the date, the groups name and address, and the name and telephone number of the groups contact person at the top of the release. The words FOR IMMEDIATE RELEASE should also appear at the top of the release. 3. Center the headline. 4. Leave enough space in the margins for the editor to edit or insert instructions. 5. Make sure the release is typed and double spaced. 6. If the release is more than one page, write more at the bottom of each page and continue writing on the next sheet of paper. (Do not type on both sides of the page.) The first word or two of the headline should appear in the top left-hand corner of the next page. 7. Limit your release to a maximum of three pages. 8. End the release with 30 or ###centered at the bottom of the page.
Creating a feature story. A feature story is often framed in connection with a particular event, such as the tenth-year anniversary of the founding of the group or a childs success in academics or athletics. The focus of these stories, though, should be on an individuals experiences. Feature stories can get a lot of attention and are some of the best opportunities for parent groups to share information about what they do. But these opportunities come with a price. Because a feature story focuses on peoples real life experiences (instead of an event or organization), those who are interviewed may feel a loss of privacy. If the group is interested in putting a feature story together, be sure the families who agree to an interview know that anything they tell the reporter about their situation may be included in the story. Ideas for feature stories can be presented to local editors or reporters in a short two- or three-paragraph summary. They can also be discussed in conversation. A formal news release is not necessary. A feature story idea is taken one at a time to reporters, unlike a news release, which should be sent to all of the names on your media contact list at the same time. Editorials. Try to meet the editorial page editors of your local papers. They sometimes write short editorials complimenting local organizations on their work. These might coincide with an anniversary or one of your organizations events, but they do not need to be tied to specific events. Op-eds. An op-ed is an opportunity to express opinions about issues of interest to the group. It is similar to an editorial, but, instead of being written by a member of the newspapers ediYou Are Not Alone
torial staff, it is written by members of the group. Consequently, the group doesnt have to worry about whether or not a journalist has put the right spin on an issue. Instead, you can devote your energy to presenting the groups position on the issue. Unfortunately, it can be difficult to get this type of editorial published. Most newspapers want their editorials to cover a range of issues. Therefore they are more likely to publish an op-ed if a similar editorial has not been run already or if yours is the first by someone of your background or profession. Similarly, newspapers are more likely to publish op-eds when they are connected to another newsworthy event. To submit your op-ed, mail or fax it and a brief cover letter to the newspapers editorial page editor. Call a few days later to confirm its receipt and to find out if the newspaper plans to print it. If they arent planning to publish it, find out why. The information you receive may increase your chances of getting future editorial pieces published. Preparing a story for television. Of course television coverage of community events varies, but many TV stations are expanding their local news slot, and so stories about your group may be very welcome. A number of parent groups have obtained TV coverage of their Candlelighting Ceremony, their holiday party, or their fundraising events. If your group is interested in getting television coverage of an event, send a news release to the editors on your media contact list. Then telephone your best targets about five days ahead of the event you want to have covered. Remind the news director about your news release and ask tactfully (you can be enthusiastic, but dont push) if they will cover your event. If they agree to cover your event, delegate someone from the group to assist them during the event. They will want to know the schedule of events, where they can set up their equipment, and so on. Public Service Announcements (PSAs) are another way your group can get its message on television. A PSA is like a short commercial about your group and its services. While the broadcast of the PSA doesnt cost anything (the air time is free), producing a PSA requires a considerable amount of time and money. If you are interested in producing a PSA, seek assistance from professionals. Occasionally, a local television station or advertising agency will donate their time and talent to help you. You may also be able to find a local celebrity who is willing to act as a spokesperson. Many cable stations are willing to devote significant time to local organizations. They may not have the staff to cover an event outside their offices, but they might be willing to schedule an oncamera discussion with a group of parents and social workers. The immediate viewership might not be great, but youll be able to get a tape for reshowing to local organizations. Getting on the radio. There are several ways your group can get on the radio. First, investigate the possibility of having your groups events included when the announcer reads the stations community calendar. Second, find out about local stations call-in or talk radio programs. Maybe one of the parents from the group would be willing to tell his or her story on the radio. Make an appointment to go to the radio station and talk with the host of the
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program so that you can present your idea. Finally, you might consider making a PSA for the radio. These are much easier to produce. Often, you only need to create a script that the newscaster at the radio station will read. Try to create a message that an announcer can read in ten to twenty seconds. Then present your script to the station manager or public service director.
Taking advantage of the Internet

The Internet is a worldwide computer network, often referred to as the information superhighway. Parents groups can use the Internet to: make others aware of their group gather information about childhood cancer communicate with group members communicate with other parent groups The Internet is also a wonderful resource for parents and patients who are unable to attend the groups regular meetings. Because the resources on the Internet are available twenty-four hours a day from your home computer, there are none of the scheduling conflicts and transportation difficulties that might make it difficult for interested parents to attend regular meetings. Internet access is also becoming available for children who have to be hospitalized for long periods of time. Ask the staff at your hospital for more information about how you can set up a computer in a childs hospital room. Getting started on the Internet. To take advantage of all that the Internet has to offer, you will need a computer and a modem. If you dont have access to this equipment already, here are a few of the things you should know. Get the fastest modem you can. Modems link your computer to the Internet via your telephone line, and their speed is measured in bauds. The higher the baud number, the faster the modem. Dont be tempted by freebie computers. A secondhand computer may not be capable of running the latest software, and the cost of upgrading can be as high as the cost of buying a new computer. So before you say yes to a donation, be sure you investigate the offer. Invest in and use virus detection software. McAfee and Norton Antivirus are two excellent programs. It is important to update virus detection software on a regular basis. Updates are usually available free of charge from the program supplier.
Outreach activities
Almost any activity that informs the public about your group can be considered a form of outreach. Groups can create posters and brochures to display at conferences and on community bulletin boards. Groups may also form a speakers bureau to speak at meetings of local civic groups and professional organizations. Printed materials. Brochures, newsletters, and posters are effective ways to spread the word about your group. With the advent of desktop publishing programs for your personal computer, it is easier than ever to create these materials. To be as effective as possible, these materials should provide their readers with some basic information about your group. Who does the group serve? What services does the group offer? What is your mission? Who should people call to get more information? The effectiveness of printed materials is also affected by their distribution. Make sure you put posters and brochures where people will see them. Some possible locations include community centers, treatment centers, social service agencies, and educational institutions. Speakers bureaus. A speakers bureau can enhance your outreach efforts. A speakers bureau is a group of parents who are willing to share their experiences with civic groups and professional organizations. Some of the events a speakers bureau might attend include Elks, Kiwanis, Rotary Club, or Junior League meetings, workshops for teachers, and meetings of professional associations for nurses and social workers. By sharing our experiences with these groups, we can educate the community about the unique challenges we face as parents of children with cancer. Even those of us who have never done any public speaking may be motivated to share our knowledge with others. Every time we share our experiences, we enhance the reputation of our group, we create new referral sources, and we involve more people in our mission to help families meet the challenges of childhood cancer.
To get on the Internet, you will also need an Internet service provider (ISP). Box 41 contains some selection tips.
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Box 41. Choosing an Internet Service Provider

Internet service providers vary greatly with regard to their software and services. Some ISPs simply provide you with a connection to the Internet, and they may or may not include the software you need to take advantage of this connection. Other ISPs will connect you to the Internet and provide all the necessary software. Software can be expensive, so look for an ISP that provides all the necessary software. Make sure that the provider or service has telephone access in your local calling area. If you travel, telephone access either through a toll-free number or a number in the area traveled may be of interest. Unfortunately, tollfree access isnt usually free, so be sure you find out how much it costs. Look for a service with a fixed monthly fee and unlimited access. If you plan on having a Web page, ask if free Web page postings are available. Many providers and services charge extra for this service. You will need an absolute minimum of 1MB (one megabyte) of web server space, and more is definitely better! Also, confirm up front if it is OK to put your groups Web page on their server, because many providers and services only allow personal pages on their Web server. If your provider or service will not accommodate your group, then you will need to investigate purchasing commercial Web page space. Commercial space is expensive, so look for a bargain or find someone who is willing to donate the space. Take a look at the computer magazines at your local library. These magazines contain periodic reviews of Internet service providers, and they are an excellent source of information about whos hot and whos not! One common complaint about Internet service providers is that there are too many busy signals. To find out how difficult it is to establish an Internet connection with the ISPs you are considering, get the ISPs local access number and call it early in the morning and late afternoon (when the lines are usually busiest). If you get a lot of busy signals, you may not want to use this ISP. You can also ask a friend (with a computer and an Internet connection) to go to the Inverse Network Technologies web site (http://www.inversenet.com) to look up the call failure ratings for the ISPs you are considering.
WARNING!
The Internet is very public and is virtually uncensored. Information obtained via the Internet should always be treated with caution, and we recommend that you verify all references.
Whats on the Internet?

The services available on the Internet can be divided into three main categories: electronic mail (called e-mail for short), the World Wide Web, and Usenet and chat rooms. Each of these services is described in the sections below. E-mail. Electronic mail is a faster and more powerful way to communicate than the regular snail mail we send via the Post Office. Like snail mail, e-mail is sent to an address. This address consists of a username and a host name. The username can be someones login name, account name, or even an account number. The host name is the Internets name for the computer or the Internet provider that is being used. The host name also provides information about the sponsorship or ownership of the account being used. As an example, lets look at the e-mail address for the national Candlelighters Childhood Cancer Foundation. Their e-mail address is:
info@candlelighters.org
Info is the account name, and candlelighters.org is the host name. Finally, .org indicates that the host is an organization. If Candlelighters were a commercial company, their address would end with a .com suffix. Similarly, if Candlelighters were an educational institution, their address would end with an .edu suffix. E-mail is much faster and more versatile than snail mail. Email is sent at virtually the speed of light, and it can be sent at any time of the day or night. E-mail can also be sent to many recipients simultaneously. E-mail will also make it possible for your group to join a mailing list, known as a listserv. A listserv is an automated service in which any e-mail sent to the list is relayed to all of the members of the list. These lists allow you to communicate with other people from around the world who share your interests. Two of the listservs that address childhood cancer are described here. Candleleaders-l is a listserv that provides communication between Candlelighters groups. Group leaders use this list to provide each other with advice, ideas, information, and encouragement. Its a wonderful opportunity, and you dont want to miss it! To join this list, send e-mail to: admin@theplace.com. Leave the space marked subject blank. In the body of the message, type: join candleleaders-l (note: l is a lowercase L). PED-ONC is another listserv of interest to Candlelighters members. This list is provided as a service of the Association of Cancer On-line Resources, Inc. (ACOR). PED-ONC is a pediatric cancer electronic support group. To join this list, send e-mail to: listserv@listserv.acor.org. Leave the space marked subject blank. In the
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body of the message, type: subscribe PED-ONC Firstname Lastname. (Note: Firstname and Lastname are your first and last names.) If you have an automatic signature turn it off. After joining a mailing list, you will receive a welcome e-mail. Do not delete this message. It contains instructions on how to change subscription options and leave the list. World Wide Web. The World Wide Web (WWW) is one of the most exciting uses of the Internet. It provides a way to gather information about organizations, treatments, current events, and almost anything else you can think of! This information is stored on millions of interconnected Web pages. Each page has an address, known as a uniform resource locator or URL. For example, ACOR has a list of cancer mailing lists on one of its web pages. The URL for this page is:
http://www.medinfo.org/listserv.html
The national CCCF also has a Web page. Its URL is:
http://www.candlelighters/org/
To access these Web pages or any other data on the WWW, you need browser software. Your Internet provider usually provides this software. Once you have your browser software up and running, you simply type the URL for the page you want to see, and the Web page will appear on your computer screen. You can also use your browsers search function to find Web pages by and about other groups like yours, as well as any topic you can think of. In addition to gathering information, the WWW can also be used to share information. By designing a Web page for your group, you can make others aware of the groups mission and activities. If you are interested in having a Web page, you will need to find someone who knows how to create them. Ask members of your group and your Internet provider for more information.
Usenet. Usenet is a worldwide system of bulletin boards. Access to these bulletin boards (which are also referred to as newsgroups) is provided by most Internet service providers. These bulletin boards are arranged by topic. Some of the bulletin boards that are of interest to Candlelighters groups and their members are the alt.support.cancer newsgroup and the sci.med.disease.cancer newsgroup. These bulletin boards can be used to advertise your groups activities or to gather information for the group and its members. There are several ways to access and read the information posted on these bulletin boards, but the easiest and most common access method is through the use of your WWW browser. Contact your ISP for more information on accessing Usenet. Note: Double check everything you read on a bulletin board. These boards are not censored and may contain some inaccurate information. Internet Relay Chat. Internet Relay Chat, better known as IRC or simply chat, has developed into an increasingly popular Internet activity. Chat is like real-time e-mail and provides users with the spontaneity of live interaction. There are thousands of chat rooms in operation with many dedicated to oncology issues. To access most chat rooms, you will need dedicated IRC software, but there are some that you can access simply by using your WWW browser. To obtain a list of IRC software and chat rooms, use your WWW browser to search for chat. Chat rooms can provide twenty-four-hour support for families and another means of sharing information about your groups activities. Again, look out for potentially inaccurate information.
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Chapter 22: Endings and New Beginnings
he end of a group is not a failure. Parent groups do not have to last forever to be successful. They exist to provide support for as long as its needed. Although there is no reason for a group to outlive its usefulness, it is important for groups to survive long enough to help parents and families meet the challenges they face.
When do groups end?

Box 42 lists some of the reasons that groups end, followed by a few prevention strategies.
Box 42. Why Groups End

Groups end when they are unable to make new members feel welcome. Sometimes a tight, closeknit group can make newcomers feel like intruders. Welcoming and encouraging participation from new members and providing them with an orientation will minimize this possibility and will help them feel more at home. For more specific information about orienting new members, see Chapter 5. Groups end when they fail to respond to members changing needs. If members are not getting what they want from their participation in the group, they stop coming. Periodic evaluations will provide your group with the information it needs to plan effective activities and programs. For more information about doing an evaluation, see Chapter 13. Groups end when there is not enough variety in the groups activities. The most successful groups offer a range of activities for their members. Offering a range of activities provides members with more opportunities to get involved in the group, and it makes the group more attractive to new members. For more information about possible activities, see Part II. Groups end when leadership transitions are not successful. (We underlined this one because it is one of the most common reasons for a group to end prematurely.) Shared leadership makes these transitions easier, and the support leaders gain from one another goes a long way toward preventing burnout. For more information about passing the torch of leadership successfully, review the information in Chapter 16. Remember, a group is yours to serve, but it belongs to everyone. Groups end when staff resistance cannot be overcome. Developing good working relationships with the medical staff can definitely improve your groups chances for longevity. For more information about working with medical staff, see Chapter 25. Groups end when they are no longer needed. Although it may sound strange, groups can also end because they have succeeded in meeting all of their members needs. Groups only exist when there is a need for them.
What does the end of a group look like?

Faltering groups share some of the following characteristics: People seem distracted during meetings. They look at their watches, and it seems like they would rather be someplace else. The group lacks its usual energy and enthusiasm. No one is willing to take responsibility for the groups leadership. Group discussions wander all over the place.
Conflict becomes the norm rather than the exception. Group members seem apathetic. People stop coming to meetings and activities.
Now what?
If some of the characteristics mentioned above sound familiar, dont panic. Review the information from your evaluations and needs assessments and try to figure out why the group is faltering. Maybe its one of the reasons described earlier in this chapter.
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Once youve identified the problem, you can focus your energy on implementing the appropriate remedy. Help is also available from other group leaders and from the national CCCF office.
Ending a formal group

If your group is a 501 (c) (3) organization, ending the group will involve a few extra steps. These are listed below. 1. Pay or make provisions to pay all liabilities. 2. Close any bank accounts. 3. Dispose of any leftover assets in another 501 (c) (3) organization.
4. Make provisions for files to be stored for the requisite number of years. 5. Fill out the forms provided by the IRS or state government (usually Attorney Generals office) to make the dissolution of your organization official.
Beginning again
The end of a group is not necessarily permanent. All it takes is another energetic person and some interested parents, and the group can be reborn! Box 43 tells what happened to one group that ended because of an unsuccessful leadership transition.
Box 43. A New Beginning for a Group

Because of an oversight at the treatment center, information about a group that no longer existed and the old leaders name and telephone number were included in the information packets distributed to newly diagnosed families. Eventually this information was discovered by several interested parents, who called the old group leader seeking more information about the group. Most of these parents gave up when they discovered that the group no longer existed, but one mother saw an opportunity to get the group started again. She gained access to the old groups mailing list, she called the national Candlelighters office for some advice and information, and she went to the American Cancer Society to get help with mailing and printing a newsletter. She used this first newsletter to tell people about the group she hoped to rebuild, solicit articles for future newsletters, and find out which parents would be interested in joining the new group. (The newsletter included a needs assessment questionnaire similar to the one in Chapter 12.) This mother also distributed the newsletter in the clinic waiting rooms and used it as a way to introduce herself and the group to newly diagnosed families. The group is still in its beginning stages, but its off to a great startparents have volunteered to write book reviews for the newsletter and have expressed an interest in starting a teen group and a bereavement group.
So if you thought the end of your group would be the end of the world, guess again. It may just be another beginning!
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Chapter 23: Working with the Resources in Your Community

earning to take advantage of the resources in your community is an important part of keeping your group going. Because taking care of ones child and family requires so much time and energy, many group leaders report that parents ability to play an active role in the groups activities has a tendency to ebb and flow. As one group leader explains, I have to keep reminding myself that, while I am in a place that is reasonably safe, other families are still doing battle and are not ready or able to take the time to participate. In light of this situation, many groups find it helpful to seek assistance from those who are not struggling with cancer. This chapter will provide you with some of the information you need to begin taking advantage of the resources in your community. By doing so, your group will be able to access: an additional sources of referrals a list of organizations from which families can seek special services a list of potential partners with which to collaborate on bigger projects a new source of time, energy, talent, and money that can be used to help the group achieve its goals
work. For information about publicizing your group, please review Chapter 21. You may also wish to review the information in Chapter 11 on developing a contact file. The information in both of these chapters will help you get the word out about your group. Sources of special services for group members. Because groups cannot be expected to meet all of their members needs, it is helpful to have a list of other organizations who might be able to provide families with the additional services they want. Some of these services are described below. Grief counseling. Some bereaved parents find it very helpful to talk with other parents whose children have died. If your group is not able to provide the grieving parents in your group with this opportunity (see Chapter 18), you should consider developing a list of the grief counseling services available in your community. Some of the organizations that provide these services include hospitals, hospices, The Compassionate Friends, and religious institutions. Diagnosis-specific assistance. The type of assistance that a family seeks is partly affected by the type of cancer the child has. For parents who want to talk to someone who is going through exactly the same thing they are, or who want information that is particular to their childs disease, access to organizations dedicated specifically to their childs diagnosis can be very helpful. Counseling services. All families are affected by the emotional impact of having a child with cancer, but some families find the emotional challenges more difficult than others. Developing a list of the individual and family counselors in your community is an effective means of providing families who are struggling with the extra help they need. Financial assistance. Because caring for a child with cancer is so expensive, it is always good to know where families can seek financial assistance. Check the list of childhood cancer organizations in Appendix A to see which ones offer financial assistance.
What are the communitys resources?

Whether we have lived somewhere for a few months or all of our lives, most of us are unfamiliar with the sources of our communitys strength. To help you tap into your communitys resources, we have provided a list of some of the organizations that are most likely to be able to provide your group with the benefits described above. Potential sources of referral to the group. Any organization that might be contacted by the parents of a child with cancer is an organization that might be able to refer those parents to your group. The possibilities include: churches, temples, and synagogues public and private schools libraries public health departments pharmacies other organizations concerned with childhood cancer local parent groups for other childhood conditions local chapters of organizations concerned with children and childrens health REMINDER: These organizations cant refer parents to a group they dont know about. Therefore your group must find ways to make others aware of its
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Organizations to collaborate with on bigger projects

Sometimes groups are interested in working on projects that are too big to tackle alone. For example, a group may wish to join with others when lobbying for a particular piece of legislation, when petitioning the hospital for more staff or new equipment, or when trying to build a Ronald McDonald house near the local treatment center. By working together, groups have more power
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and influence, and they can achieve their goals more efficiently and economically. But working with others does not guarantee success. Success depends on whether you are working with the right partners. Your partners should be willing to contribute their organizations time, energy, and money, and, most importantly, they should be as committed to the project as you are. Consequently, your list of potential partners will vary depending on the project. When trying to think of who your potential partners might be, ask yourself, Who else will benefit from this project? If it will help other patients at the treatment center, consider contacting local parent groups for other childhood conditions and/or local chapters of organizations concerned with childrens health. If the project will benefit the professional community, consider contacting local chapters of professional organizations. To find out about the organizations in your area, contact the local library, professional societies, self-help clearinghouses, and the treatment center. You may also wish to contact the following organizations for information about local parent groups. Association for the Care of Childrens Health 3615 Wisconsin Avenue, NW Washington, DC 20016 (202) 244-1801 Federation for Children with Special Needs 312 Stuart Street, 2nd Floor Boston, MA 02116 (617) 482-2915 National Center for Education in Maternal and Child Health 38th and R Streets, NW Georgetown University Washington, DC 20057 (202) 625-8400 National Information Center for Handicapped Children and Youth P.O. Box 1492 Washington, DC 20013 Organizations to contribute time, energy, and money. Virtually every organization in your community has something it can offer to your group. To find these organizations, look in the Community section of the local newspaper and the phone book. We also recommend that you ask the hospital staff, the librarian, the Chamber of Commerce, the local colleges and universities, and the local community centers about organizations that are interested in community service. Some of the resources available from various community organizations are described below. Local businesses can be asked to donate a portion of their proceeds to the group. Businesses may also be willing to donate their services, for example a restaurant might provide the food for a group event, or a printing company might be willing to help the
group print its newsletter. Financial assistance can also come from organizations as varied as the local Harley Davidson club, the local chapter of the Veterans of Foreign Wars, and the local boy scout troop. Groups also report receiving financial assistance from Rotary Clubs, the Kiwanis, and local fraternities and sororities. For more information about how to solicit donations from these organizations, review the information in Chapter 20. Recreation and hobby clubs are another excellent resource for your group. The local photography club could take pictures for your events, music clubs and magic clubs might perform for the children in the hospital or as part of a fundraising benefit, and the local computer society could help you get set up on the internet. There are so many possibilities!
Volunteers
Your community is also full of people who may be willing to donate their time and energy to your group. These people may be friends of the families in your group, members of sororities and fraternities, members of religious organizations and service clubs, residents of a retirement community, and/or part of a military installation. One group leader tells us (OBrien, 1996), If your group happens to be in the vicinity of ANY military installation, try contacting the Public Affairs office and ask for some points of contact at the installation that you can call. Then, make a pitch for their support. Honestly, military communities are excellent for pitching in and helping. They truly love to volunteer. About eleven years ago, our group called Andrews AFB for any kind of assistance, and now they host the best and largest Christmas party I have ever been to! They really treat our kids like royalty, and everything is paid for and donated (toys, dinner, entertainment, etc.). Regardless of their background, these volunteers are an incredibly valuable asset, and your group should do all that it can to sustain their interest in working with you. The list of suggestions in Box 44 will help your group maintain successful relationships with its volunteers.
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Box 44. Working with Volunteers

Plan short-term projects such as helping with the newsletter, babysitting, or driving families to appointments or group meetings. Be clear about what you need and how volunteers can help. Tell prospective volunteers how much time you need. Match your requests with their skills and interests as closely as possible. Provide them with public and personal recognition for their work. Let them know who they can call or talk to when they have questions or concerns.
Another important step in working effectively with your volunteers is finding out how they can help your group. You can use the form in Pullout 10 to help you assess potential volunteers interests and skills.
Pullout 10. Group Volunteer Form

This Pullout is available in Appendix D for easy photocopying. Name: _________________________________________ Date:________________________________________ Address: ___________________________________________________________________________________ City/State/Zip: ________________________________________________________________________________ Telephone: Day __________________________________ Evening ______________________________________ E-Mail: ________________________________________ Fax: ________________________________________ 1. Where do you work? What do you do? ____________________________________________________________ 2. What community groups, clubs, service organizations are you involved in? ____________________________________ 3. What are your hobbies/interests?_________________________________________________________________ Other skills and ideas that I have to offer to the group:____________________________________________________
PLEASE CHECK THE ACTIVITIES THAT INTEREST YOU: Fundraising Volunteer Opportunities:
I will help raise money to carry out the groups goals I will help plan special events I will contribute food for special events I will do cleanup for special events I will help with special event group mailings
Office/Group Volunteer Opportunities:

I will volunteer my time in the office to help with: database filing mailings picking up donated items resource library I will line up speakers for educational meetings I will help create and compile parent questionnaires about special interests (e.g., nutrition, education) I will help with the parent information center (waiting room bulletin board) I am interested in working on: public relations accounting legal issues hospital liaison office assistance newsletter I am willing to provide refreshments for the childrens group
Transportation/Housing Volunteer Opportunities:

I am willing to help with transportation for the childrens group I would be willing to provide support to families here from out of town for treatment: provide temporary housing take on tours of the city take grocery shopping pick up or take to airport, train, or bus station babysitting for brothers and sisters of hospitalized children
Source: Adapted from Nathanson, 1986, pp. 89-90. You Are Not Alone
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The American Cancer Society

The American Cancer Society (ACS) is a powerful organization in the cancer community and can be a valuable resource for parents and families. The national office of the ACS was, for many years, a key supporter of and collaborator with the national CCCF program. Local chapters or divisions of the ACS may provide the families in a parent group with funds for transportation to the clinic, wigs, and prostheses. Local divisions can also provide families with referrals for medical and social services and with information about cancer and its treatment. The ACS can also be a valuable source of support for the parent group itself. Some of the services available include providing guest speakers for informational meetings, use of office space, and assistance in printing and distributing the groups newsletter. Local ACS offices may also refer parents to the group or provide group leaders with training in leadership skills, procedures for running meetings, and so on. While there are potential benefits of partnership between the ACS and parent groups, these partnerships may face challenges. Tension can exist if the ACS staff tries to control the parent groups purpose, meetings, newsletter, or fundraising efforts; some ACS offices are concerned that parent groups fundraising efforts will compete with their own. Another potential difficulty in forming partnerships with local offices of the ACS involves the differences in the organizations priorities. The ACS is primarily focused on adults with cancer, while parent groups are focused exclusively on childhood cancer. The organizations also differ in their leadership. Parent groups are led by those who have been personally affected by childhood cancer, whereas local ACS offices are usually run by organizational professionals whose knowledge of cancer comes from their professional training. These differences in experience can lead to disagreements about the type of programs and services that should be offered. Successful partnerships between the ACS and local parent groups offer many potential benefits to each organization. However, success depends on each organizations willingness to acknowledge and support the others efforts. Before you enter into a partnership with the ACS office in your community, take some time to be sure that they are willing to support your groups mission. Your mission is important, and the benefits of partnership are available only in an atmosphere of support.
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Chapter 24: Working with Schools and Meeting Childrens Educational Needs
chool is a vital part of young peoples lives. When a child or adolescent is diagnosed with cancer there may be a temporary (or recurring) period in which they are too ill to go to school or keep up with schoolwork at home or in the hospital. But as soon as they are able, it is important that they continue to go to school or keep up with their schoolwork under the supervision of parents, hospital nurses or teachers. Special educational programs also can assist. Not only do children with cancer sometimes face special problems in school and with their peers, often their siblings do as well. Siblings who are worried about their ill brother or sister may be especially protective of them in school and may themselves fall behind in schoolwork because of their worries.
Box 45. Checklist of Issues for Educational Personnel

Type of cancer and treatment Factors affecting attendance -Frequency and purpose of outpatient visits -Frequency/duration of inpatient treatment -Stamina Factors affecting social interaction -Changes in physical appearance due to surgery, chemotherapy, or radiation, e.g., amputation, weight gain or loss, hair loss, or catheters -Chemotherapy-induced mood changes -Suppressed or increased appetite -Increased frequency of urination Factors affecting learning -Neuropsychological side effects of treatment -Changes in fine/gross motor coordination -Vision or hearing impairment -Limitations in physical activity -Fatigue -Nausea Factors affecting medical care -Medication to be administered at school (name, dosage, frequency) -Medications to be avoided -Catheter trouble-shooting -Exposure to infectious diseases, especially chicken pox, and reporting methods -Name and telephone number of the treatment center contact person in case of questions and emergencies
What is the parents role?

Parents are the critical link between the hospital or medical clinic and the school system. While some hospitals and large medical centers have school liaison personnel who can aid the childs transition to school, and help inform and educate the school staff with regard to the special needs of children with cancer, this task usually falls to parents. We end up being the primary, and often the only, link between the medical and educational systems. Groups of parents can learn from each others school experiences with their children, they can create special programs, and they can support efforts to provide school staff members with information, suggestions, and an accurate assessment of their childrens specialor not so specialneeds. Later in this chapter we provide information on how to set up an educational program, working with a team made up of the parents, teacher, school administrator, and others.
What are some of the issues faced by children with cancer in the school system?
Children with cancer may face a series of issues in their school life. Some are medical, having both physical and intellectual implications, some are psychological, and some are social. In an excellent booklet prepared for the Candlelighters Childhood Cancer Foundation, Educating the Child with Cancer, Patricia Deasy-Spinetta has outlined a number of medical issues that hospital personnel and parents should address with school staffs (Box 45).
Source: Deasy-Spinetta and Irvin, 1993, p. 13.
Many children with cancer will miss some school and a few will miss a lot of school while undergoing treatment and hospitalization. Most young people, though, can and do keep up with their schoolwork and classmates. In order for this to happen, however, everyone involved must make some special efforts. The school staff must be kept informed regarding the childs special needs: in some cases extra tutoring, special classes, psychological counseling, or special testing will be needed. Many of these services now are guaranteed under the provisions of the Individuals with Disabilities Education Act (IDEA), the Rehabilitation Act, and the Americans with Disabilities Act (ADA). The IDEA permits the school and family to develop an individualized educational program that is
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responsive to the ill childs special educational needs. In addition to maintaining adequate educational progress, many young people with cancer report the negative effects of teasing and rejection from their peers. Whether a product of discomfort, ignorance, awkwardness, meanness, or prejudice, it is not always easy for children with cancer to sustain good peer relations. As several youngsters have reported: When I went back to school I felt that students were shying away from me. I thought they were ignoring me at first, but now I realize they just didnt know what to say. When youre sixteen and looking for girls, and you dont have a leg, youre not exactly the most popular guy to hang around with. Some parents have been much clearer, and harsher, in their reports of the teasing their children received: There was some teasing, but he didnt want me to talk with the teacher or do anything about it. That would only make it worse, he thought. The kids would make fun of him when he had no hair and when he was on medication and blew up like a balloon. There were remarks made to him that he was going to die. The answer to this last parents comment is that many school people do not anticipate these negative peer situations and, even when they do, many teachers have no idea how to prepare classmates for a successful return of the ill child to the school. A third important kind of problem that sometimes develops for children with cancer is insensitivity or ignorance on the part of educators. For instance, several parents have pointed to the absence or breakdown of information and concern in the following examples: During his therapy one of the teachers told me hed have to have a letter from a doctor at the hospital because he did not believe that my son had leukemia. It must all be in my mind, he said. One teacher didnt know or remember that she was on chemotherapy and that her memory was impaired. The teacher marked her down because she forgot to hand in some homework. At first the teacher babied him, was scared of him and afraid to touch or go near him. He seemed fragile to her. He sensed this and used this to his advantage.
Some children with cancer and their families are at greater risk for encountering school-related problems than are others. For instance, as one parent stated: My son was different from some others because he was a C and D student before he got cancer. When he came home from the hospital no one called the house. All the initiative had to be ours, and we had enough to deal with already. I guess they figured that since he was not a good student to begin with they should not bother. Besides, in their minds he was dying already. I think the school gave up on him, and as a result he gave up on school. Children at special risk. It appears that young people who were not doing well in school before their diagnosis often do not fare well educationally afterwards either. In addition, children from less affluent families, and children who do not know how to relate effectively and express their needs directly to school personnel, may also suffer. Parents who themselves did not have productive and enjoyable educational careers are less likely to feel comfortable exerting influence on their childrens behalf with educators. Finally, children undergoing certain kinds of treatment, especially cranial surgery and/or radiation, are at greater risk for educational problems than are others, although some of these problems may show up later. And just as children with cancer in these situations may have an especially difficult time in school, so may their brothers and sisters. The characteristics of children who are at the greatest risk for educational complications are listed in Box 46.
Box 46. Cancer-Treated Children at Greatest Risk for Educational Complications

Diagnosis of brain tumor or acute lymphocytic leukemia Disease, surgery, chemotherapy, or radiation of the central nervous system Cancer diagnosed before mastery of basic academic skills Numerous or lengthy hospitalizations Persistent, severely compromised stamina High rate of school absence Prior history of developmental/educational delay Sensory deficits or neurological impairment Family history of school difficulty Significant socioeconomic deprivation or family dysfunction
Source: Hematology-Oncology Educational Liaison Program, University of Rochester Medical Center. In Deasy-Spinetta and Irvin, 1993, p. 70.
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Making the transition back to school a little easier

Deasy-Spinetta and Irvin (1993, p. 8) provide several examples of small steps that can be taken to ease the return to school. A kindergarten child shared his clinic family as part of weekly classroom This Is My Life presentations so that he would not stand out as different from classmates. A high school student with limb salvage surgery brought her best friend to the clinic and hospital adolescent group, and that friend served as an information buffer with her peers. A fifth-grader had the school nurse and his mother present information on his disease and treatment. He then took over the presentation with their backup support. These are simple examples of what can be done when parents get together to share their problems and think together about solutions. Parents, and groups, must take the lead in providing school personnel with information and alternative approaches to the return of the child with cancer to the school setting that is such a vital part of a normal life.
information and experiences. If teachers know what is going on at home and in the hospital or clinic, they can better plan strategies for assisting the child in the classroom. And if parents know what is going on in the classroom, they can better assist the school in normalizing the educational experiences of their children with cancer and in requesting and using services that will help children succeed.
What can parents do?

Special Education law says that parents and schools are to work together to develop an appropriate educational program for the student. This is not always an easy task for parents. Participation in educational planning is often a new role for them. Many parents feel intimidated by sitting down with several professionals and making educational decisions. Parents need to see themselves as having valuable information that only they possess, and as specialists when it comes to knowing what is best for their child. Parents need to become advocates for their child, as the laws intended. While it is true that everyone involved in educational planning wants the child to be successful in school, the parents must speak up strongly regarding what they see as an appropriate program, even if others disagree. To become an active participant in the planning process for their child, parents should plan ahead for each meeting with school staff. Parents can ask themselves questions such as, Where are we now? Where are we going? How will we get there? And then, after the program has been in place for a short time, How well is it going? Should anything be changed?
What kinds of help do educators need?

Teachers and principals have described some of the types of assistance they need in working with children with cancer in school. Chief among these is their need for information, for specific details about the childs health status, and about the nature of the cancer and its treatment. In addition, many teachers have discussed their confusion about how to balance the need to expect and require certain things from the young person and at the same time to be caring and sensitive to their special situation, essentially how to protect but not overprotect. As several teachers said: I need more awareness training and information about what to expect during special illnesses and disabilities. How should I deal with the expected and unexpected things that happen? How should I deal with teasing and communicate with families? It is important to treat the child normally and not to give her special favors. Her health was much more important than the schoolwork and we did not want to put pressure on her to catch up too fast. We (teacher and family) had talked about the fact that there might be excessive absences, but this did not happen. The most vital help that both educators and parents need is to create collaborative relationships that encourage the full sharing of
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Education and the law

There are two laws that affect educational planning for the child with cancer. These are the Individuals with Disabilities Education Act (IDEA), as amended in 1997, and Section 504 of the Rehabilitation Act of 1973, which was incorporated into the Americans with Disabilities Act1990 (ADA). Both laws state that eligible children are to be provided with Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). LRE means that eligible children must be enrolled in regular education classes as much as possible. Both laws affect the provision of regular education services as well as special education services. Both laws provide for reasonable accommodations (Section 504) or Supplemental Aids and Services (IDEA) in regular education class. Children with cancer may be eligible as Physically or Otherwise Health Impaired under IDEA. In order to be eligible for services under IDEA, children with cancer must be in need of special education services. Many children who have cancer might need few, if any, special services. Some children may need many servicesat least for a while. Section 504 prohibits discrimination against people who have or who have had cancer (or other disabilities) and applies to edu-
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cation, transportation, work situations, and public accommodations. As far as education is concerned, it essentially says that any programs or services that are offered by the schools to some students must be offered to all students, regardless of disability. The term Special Education and Related Services (IDEA) might include teacher consultant services, social work services, occupational or physical therapy services, transportation to and from school, psychological and educational evaluation of the child, and accommodations in the regular education classroom. Accommodations can affect the amount of homework given to a student, the amount of time a student has to take tests, various techniques to help the student maintain attention, how a teacher presents new information to the student, where the student sits in class, and the use of assistive technology such as calculators and computers. For example, the child with cancer might need to take fewer courses at one time, receive medication or nursing support in the school, or have a second set of textbooks to keep at home to use during absences. An early warning system might have to be developed by the school to warn parents if another child in the school has measles or chicken pox, so that the parents can keep the child with cancer home from school during the infectious periods. A system can be developed so that assignments can be sent home in a timely fashion during absences.
Developing an appropriate educational program

Once a child is eligible for services under either IDEA or Section 504, an appropriate educational program must be developed specifically for him or her. The program is developed by a team that includes the parents and the child, when appropriate. The laws accord parents certain rights such as meetings arranged at a time convenient for the parents, a thirty-day time line from parent referral to the development of an individualized educational program for the student, and, most importantly, the right to appeal any decision of the team as to the childs placement and services. To start the process rolling, parents need to write a letter referring their child for special education services. The letter can be addressed to the Director of Special Education Services, or the equivalent, or to the principal of the childs school. The letter should be dated because the law gives the school no more than thirty days for the committee or team to meet to plan the childs educational program. The team. A team approach is used to develop the childs educational program. The team consists of the parents, the childs classroom teacher, a school administrator, and others who can provide special education and related services. These can include a school nurse who administers medication and monitors any health problems, a teacher consultant who can contribute information regarding effective methods and strategies that can help the child learn, a social worker who can help the child who may feel overwhelmed or anxious or is having difficulties making friends, and a physical or occupational therapist who can help with any
motor or coordination problems. Others can be invited at the discretion of the parents such as the childs physician, Sunday School teacher, or an advocate who can help parents get their opinions and concerns understood and considered by the team. On the following pages we present a sample Individualized Education Plan and a sample 504 plan for school services for children with cancer with special needs. The child should be encouraged to become part of the team, when appropriate, in order both to contribute information to the team and to participate in making educational decisions. This is important because the child will begin to feel some control over his or her life and will be prepared to assume responsibility for designing his or her own program as he or she grows older. Before planning can proceed, school staff will need to be provided with extensive information about cancer and how it affects this particular child, and the course of treatment the child may still be undergoing. Do not assume that anyone in the school understands much about childhood cancer and ways to provide appropriate programming. Parents may have to take on the role of teacher in this regard. Tailoring the program. A flexible system will need to be developed that can provide for the students changing needs. A well-designed plan can anticipate and prevent problems. The team will need to meet frequently to collect information on how the student is doing and modify the plan, the methods being used, or student goals and objectives, as needed. The educational plan should address both the students interests and strengths as well as the students needs. In other words, not only should the team focus on addressing any weaknesses the student might have, it should be sure to include ways to help the student develop special interests or talents he or she might have and include courses in which it is known that the student will be successful. Encouraging success. Increasing student motivation, especially for the discouraged student, can help the student overcome many obstacles and will greatly add to his or her ability to reenter school. Success can be very motivating for the student. Studying something in which he or she is particularly interested can also be used to motivate the student to become actively involved with school. As parents carefully consider a students educational program, it is important to balance such things as school and therapy with recreation, socialization, and fun for the child. One of the most important goals a parent should have is to return the child to childhood as soon as possible. For two different examples of IEPs, see Boxes 47 and 48.
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Box 47. Individualized Education Program for Mark G.

Situation: Mark has had surgery for removal of malignant brain tumor
Student strengths: high average intelligence, good personality, likes school, is working hard to recover skills. Parent and student priorities are: to continue progress with speech fluency and balance/walking, to increase reading rate and improve written expression. Describe how the students disability affects his/her involvement and progress in instructional programs: It takes Mark extra time to process auditory information such as oral instructions and to formulate his response to oral questions. He has difficulty with written expression. He reads slowly. He sometimes loses his balance when changing position or direction. Student eligibility for Special Education Services: Physically and Health Impaired, Learning Disability Annual goals and short term objectives: Present level of performance: 1. increase speech fluency 2. improve balance, walking 3. increase reading rate 4. improve written expression 5. increase self-management of behavior Evaluation procedures: teacher observation, parent observation, student writing samples Performance criteria: 80% Schedules for evaluation: weekly, monthly Progress reports to parents: parents attend biweekly student study team meetings Special education programs and related services: Teacher consultant (TC)40 min./day, 5x/week direct and consultation Speech and language20 min., 5x/week direct and consultation Occupational therapy (OT)30 min., 2x/week direct Social Work20 min. 1x/week Transportation: to and from school Assistive technology: word processor for writing Total hours in school: 30/week. General education hours per week: 24. Special education hours per week: 6. Supplemental aids, services, modifications in general education: shortened reading and writing assignments extended time on tests extra time to complete assignments give directions one at a time give written directions when feasible provide peer note-taker or teacher notes provide with written assignments or give assignments to TC provide encouragement, reinforcement of effort and progress dont call on him in class unless he raises his hand medication shall be given to Mark per his doctors orders provide a second set of textbooks to use at home school will contact Marks parents immediately if another student has: chicken pox, mononucleosis, measles, or other infectious diseases teachers will arrange to have assignments sent home on days Mark is absent Resident district comment: Superintendents signature Parent consent (check all that apply) Understand contents of this plan and have been informed of my rights Understand contents of this plan and agree with it Understand contents of this plan and do not agree with it, but will allow it to be implemented Understand contents of this plan, do not agree with it, and request mediation or a due process hearing Parents signature Additional requirements: Location (building) of programs and services Operating district Person responsible for implementation/special education coordinator Implementation date Discussion Mark has had surgery for the removal of a malignant brain tumor. He is currently in remission. (There is a 25% chance that the cancer may recur.) He is currently on chemotherapy which he tolerates well, but he may feel fatigued or nauseated from time to time. Due to the tumor and subsequent surgery Mark has some difficulty regulating body temperature with occasional hot flashes. There is decreased frustration tolerance and some disinhibition. Verbal mediation can help Mark to manage these problems. Mark will continue to make progress in speech fluency and fine and gross motor areas with direct OT and Speech and Language services. His slow processing of information will improve somewhat, but this may always be a problem for him. Mark has missed two months of regular school although he has attended the hospital school when able. He is eager to get back to school and see his friends. Mark will be absent one day each month for medical checkups. He will also need to stay home for a couple of days when a student he comes in contact with has chicken pox, mononucleosis, measles, or other infectious diseases. A Student Study Team composed of Marks teacher, his parents, the TC, School Social Worker, and the OT will meet biweekly to consider changes in Marks functioning and to modify his educational program as needed. Medical personnel working directly with Mark will be invited to participate.
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Box 48. 504 Plan for Shata L.

Eligibility: Leukemia; Shata is currently receiving chemotherapy Strengths: independent, low average auditory memory, high average visual memory, above average reading (loves reading) Weaknesses: social difficulties due to innate shyness, hair loss, teasing; appears spacey at times; mild depression; some nausea, fatigue; frequent healthrelated absences; Shata has missed 6 weeks of school Accommodations: School Secretary warns parents of infectious diseases in classroom, school (telephone) reduced course load; flexible programming frequent encouragement; reinforce progress second set of textbooks at home homework system for absences, illnesses encourage socialization, cooperative learning, classroom participation monitor and discourage teasing allow Shata to go to nurses office to rest, as needed Social Work services: once a week and as needed School nurse: monitor Shatas health status, consult with teachers as needed liaison with Shatas doctor report to parents biweekly Shata will rest, as needed, in nurses office Case manager: monitor Shatas program (contact teachers), arrange tutoring weekly report to parents facilitate homework system as needed
Box 49. How Groups Can Help with Educational Programs

1 2 3 A planning meeting with child and family regarding school reentry. A phone call or personal contact with the local school teacher and/or principal or school nurse. Follow-up written communication to the school about the nature of the disease and its treatment, with specific information about the child. Written or oral request to the school soliciting questions about what other information the teacher or school staff desires. Constant check with the family on the process of school liaison and student performance. If necessary, a meeting with educators to plan ways to present information to peers in class (if agreed to by the family). Recontact with the school to ascertain the childs progress and to answer new questions.
5 6
Source: Barbarin and Chesler, 1983, p. 105.
Parent groups can hold special informational and training sessions for educators on all the above problems as well as these (and other) responses. Only when the staff is educated about the nature of childhood cancer, and the problems that children with cancer and their siblings sometimes experience in school, can they anticipate and plan ahead ways to avoid these problems. The best educational forums are those in which information and caring flow all ways, including medical staffs, school staffs, and families in the effort to create positive educational environments and experiences for children with cancer. In Boxes 50-52, we include some examples of educational sessions designed for school staffs by parent groups (Barbarin and Chesler, 1983, pp. 131, 135, 136). In these sessions parent groups provide the arena for medical information to be presented and for parents and children to share their own experiences.
What can mutual support groups do?

Parents and parent mutual support groups in various locales have helped to develop liaison programs that ease the connection between the hospital, the school, and the family. Veteran members of the parent group can play this liaison role and can insist upon certain things happening. Box 49 shows how groups can help.
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Box 50. Agenda for the Ann Arbor School Conference

Presentations
Medical issues in school transitions Preliminary findings from research with families of children with cancer School experiences of adolescents Parents of young children Solving re-entry problems Conference sponsored by SHARE Families of Children with Cancer, Department of Psychology, University of Michigan, and Department of Sociology, University of Michigan
Box 52. The Child with Cancer in the Classroom

An Educational Session Sponsored by Candlelighters and the American Cancer Society Objectives
to further the understanding of pediatric cancer and its treatments to understand the feelings and fears shared by both teacher and student to answer questions and concerns about the children you work with to increase the school effectiveness in dealing with death and life-threatening disease
Panels

Workshop
Presentations
Box 51. Back to School Meeting for Parents, School Teachers, and Staff
Sponsored by Candlelighters of Rhode Island, Inc. Parents are urged to attend and bring along someone from their childs schoola classroom teacher, school nurse, principal, guidance counselor, psychologist, etc. We hope to share information about the importance of school for the child with cancer. We will be discussing ways to optimize the school experience, how siblings fare, and various medical issues that might be of concern to school personnel. Our primary purpose is to open up a dialogue and to improve school/hospital communication.
Childhood Cancers: Treatment and Physical Side Effects Robert Neerhout, MD Chief of Pediatric Hematology and Oncology Oregon Health Sciences University Psychological Impact of Cancer and Treatment William Sack, MD, and three parents Child Psychologist Oregon Health Sciences University American Cancer Society Community Resources Margaret McCreedy, RN, BS Educational Services Coordinator, VNA Dr. Sack Talks to Children with Cancer William Sack, MD Child Psychologist Oregon Health Sciences University What about Siblings? Mary McBride, RN, MS Assistant Professor, School of Nursing Oregon Health Sciences University Helping Your Class Deal with Death Beverly Chappel, RN Volunteer Counselor and Speaker
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If there is not a local support group specifically for parents of children with cancer, parents can turn to parent groups such as the Learning Disabilities Association of America (LDA) for help in understanding the law and its implications for a childs educational needs. Learning Disabilities Association: (412) 341-1515 National Information Center for Children and Youth with Disabilities: (800) 695-0285, http://www.nichcy.org U.S. Department of Education, Publications for Parents: http://www.ed.gov/pubs/parents.html National Children and Adults with Attention Deficit Disorder, Protection and Advocacy Services: contact your state Department of Education, or call (800) 233-4050
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Chapter 25: Working with the Medical Staff

ost parents of children with cancer report positive experiences with the professional staffs treating their children. At the same time, these relationships are not without their problems. The diagnosis and treatment of childhood cancer is very stressful for everyone involvedparents and their children as well as the medical and nursing staff who cares for them. Under these circumstances problems can arise. Parents report concern about the following issues: Lack of direct and full information from the staff Medical language that is hard to understand Staff members who do not have sufficient time to spend Staff members who do not seem to care about the childs feelings . . . or the parents feelings Procedures that appear to be in errormistakes When a child is being treated for cancera life-and-death situationparents feel dependent upon the staff and often are reluctant to voice their concerns or their perceptions of problems. Quite frankly, many are fearful of staff retaliation, in terms of staff disinterest or lack of attention to the child. However real or unreal such retaliation may be, it is a common concern among parents.
in most cases run by parents. Professionals have roles they can play, but their utility and participation is limited.
Professional contributions to parent groups . . . and their limits

Members of the medical and social service staffs have special information and expertise about childhood cancer, about its treatment and long-term outlooks, and about ways people cope with this illness. You and other group members can get access to this expertise by inviting these staff members to meetings and asking them to write brief pieces for group newsletters. Staff members also have access to critical hospital services and personnel. When you or other parents are in need of special assistance, group leaders can refer them to friendly and concerned counselors to help troubleshoot. Psychologists and social workers can help families who are experiencing serious financial problems or great emotional difficulty. These staff members also may be able to arrange rooms at the medical facility where the group can meet and can help publicize these meetings to other staff members and to other patients and their families. In some cases the medical staff also will sponsor and financially support the group newsletter and mailings. Perhaps most importantly, professional staff members can be advocates for your local parent group. They can tell other staff members about the usefulness and good works of the group, gaining their support for group activities. They also can inform parents of newly diagnosed children about the existence of the group and urge them to get into contact with group leaders. They may link group leaders directly to parents of newly diagnosed children, thus easing the recruitment process. When parents are fearful or cautious about joining a new group of ordinary people like themselves, these staff members may reassure them that the groups activities are seen by the medical staff as important and useful. A number of professionals have expressed very positive views toward parent groups, and many of these staff members act in ways that are very helpful. For instance, consider these staff members reports: The parents who are in the group talk to us about what happens to them and what they want. No matter what we can do as professionals, there are some things that only parents can tell one another. Despite these positive views and their very useful resources, there are limits to professionals involvement and participation in parent groups. Most important is making sure that the group is being run for and by parents. Professionals can assist in this process but ought not (and ought not to be allowed) to take it over and run the group. That turns a mutual support group into simply a support group and diminishes the power and effectiveness of
How can mutual support groups help?

Mutual support groups can be very helpful by advocating for parents who have such concerns or who have experienced such problems. They can raise issues to the staff in ways that protect any individual parents identity. They can hold special educational programs for the staff, helping the staff to learn how to better deal with parents and better meet families needs. They can also invite staff members to group meetings to further educate parents. Members of the professional staff include physicians, nurses, social workers, psychologists, health educators, and other social service professionals. They can all be very helpful to mutual support groups. This chapter contains information about the relationships between parent groups and the professional staff. We discuss the dynamics of this relationship, potential sources of tension and misunderstanding, and some of the ways we can work together to help families of children with cancer. As we have seen, some groups are run by professionals, and professionals are partners in the development and operation of many others. Most parents, and most leaders of parent groups, feel quite positive about the assistance they have received from medical and social service professionals. Not only have these staff members helped to save the lives of individual children, and generally been supportive of families struggles, they also have been helpful to local groups and group leaders efforts to create and sustain local groups. These staff members have a number of specific resources that parents and group members need. At the same time, it is important to remember that the group is for parents, and
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parents initiatives. If that happens, it is no longer your group! Parents of children with cancer and professionals who serve them are different from one another in key ways. The professionals are the providers of services, while parents and children are the recipients. This difference places them in very different positions of power and affects their every relationship. They also have different kinds of knowledge and expertise. Members of the Dutch organization of parents of children with cancer, DIARY, put it this way in a recent article in the Newsletter of the International Confederation of Childhood Cancer Parent Organizations (NaafsWilstra and van den Hoed-Heerschop, 1997, p. 4): Our logo is not only the symbol of the unique bond of the familyparents and children hand in hand but the logo also wants to express that the treatment and care of a child is a matter of cooperation between professionals and parents. There may be many experts in the team of professionals, but the parents are the experts in the field of their child. They know their child the best, they know how to comfort their child when it is anxious or in pain, they know how to prepare him or her for medical procedures, they are their childs advocate. Parents and professionals need each other during the process of treatment, each providing his or her own expertise.
1. Concern that groups will create more, not fewer, emotional problems for parents 2. Concern that parents will challenge the authority of professionals 3. Concern that parents will spread misinformation 4. Concern that parents will act as professionals 5. Concern that parents will transfer doctors as a result of stories they hear Most parent groups have been able to overcome these concerns and have been able to reassure professionals in ways that have led to good working relations. But it helps to know what professionals concerns may be. We all know that the experience of parenting a child with cancer is emotionally stressful, and some professionals are concerned that when parents get together they will escalate one anothers distress. But one of the primary benefits of mutual support groups is the opportunity to share these emotional stresses with others, to tell stories of our fears and hopes, our mistakes and concerns, and to get help and support from others who have had similar experiences. Most of the time, for most of the people attending, group discussions ease the pain and stress of our emotional concerns. Some professionals are concerned that when parents gather together and share our experiential wisdom we will begin to think that our information is more accurate and important than that of the physicians and nurses. It probably is true that well-informed parents are likely to ask more questions, and that parents who talk with others in a group session may have more questions to ask of the medical staff. But that seldom means that we are challenging the staffs authority. Most parents, most of the time, are extremely grateful for the staffs expertise and readily accept the authority of that expertise in the service of their childs recovery. Even though we have emphasized the importance of parents experiential wisdom, some professionals may see that wisdom as unfounded and dangerous. But one of the strengths of a parent group is that information of any kind will probably be examined quite carefully by people with a wide range of experience. In fact, groups are more likely to challenge any single parents misinformation than they are to believe and spread it. Closely related to some professionals concern that parents will question medical authority and spread misinformation is the concern that some of us will begin to act as if we are professionalsand behave as if we had the special knowledge and authority that professionals have been trained and prepared to exercise. If we are providing the kinds of emotional and social support that helps parents feel better and cope better, social workers may be concerned that the hospital will consider them to be superfluous and terminate their jobs. The reality is that we do NOT want to take over professionals jobs. We do not have the time and energy for such pursuits and have too much respect for the jobs that these professionals do. Finally, some professionals worry that, when parents share their stories in a mutual support group, we will discuss and comCandlelighters Childhood Cancer Foundation
Conflicts happen
Parents may be cautious about challenging staff members regarding things they think have gone wrong or may go wrong in the treatment processfrom serious errors in dosage and application of medicines to annoying disrespect and discourteous staff behavior. Despite everyones best intentions, under stress these things happen! Your group can urge its members to communicate concern and feedback to the staff. Individual parents are often intimidated by staff members and are hesitant to express their concerns. When the group represents them it may be easier. Thus, the group not only helps parents but becomes a very valuable ally for medical centers and clinics that wish to eradicate such problems and get information and feedback on such issues.
Professionals concerns about parent groups

Sometimes these conflicts, or the anticipation of such conflict, creates tensions between parents and professionals concerned with children with cancer. Many professionals have not been prepared, by their experience or training, to work closely with parents in building a mutual support group. As a result, they may have a variety of concerns or fears about the development and operation of independent parent groups, and these concerns may get in their way as they work with you and your group. Research with medical and social service professionals indicates at least five sources of their concern (Chesler and Chesney, 1995):
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pare information about the physicians and social workers. Further, they may fear that some parents will be stimulated by these stories to switch physicians, perhaps even to transfer their child to a different hospital where they have heard of an outstanding physician. In fact, in parent groups we do talk about our childrens physicians and nursesan important aspect of our overall experience with the medical system and a reasonable topic for conversation (just as in staff meetings the professionals will sometimes talk about us). Such sharing may even make it easier for other parents to discover how to get along better with certain staff members. Seldom does this lead to transfer from one staff member or hospital to another.
Roles for professionals with parent groups

There are a number of positive rolesagreed upon by both parents and professionalsthat professionals can play that will be helpful to parent groups. Group leaders can consider these options and plan ways to involve professional staff members in helping them and their group. Professional staff members can: Refer new parents to the local group Provide information about cancer and treatments Provide information about where things are in the hospital and how they work Act as liaison for the group and advocate for them with the medical staff Act as liaison for the group and advocate for them with community agencies Be a referral for assistance to parents with serious problems No group can exist for long if it cannot find members and add new members as it goes on. Therefore, the assistance of the professional staff in informing parents of newly diagnosed children of the existence and value of your group is essential. Some professionals give parent group leaders access to hospital files containing the names and addresses of all parents of children with cancer being treated at that institution. Other staff members have indicated to parents of newly diagnosed children that the group is an important, but independent, part of the hospitals treatment plan for families. Any of these actions is a great help in group formation and operations. Parent groups that use professionals assistance in contacting new members must respect the confidentiality of such shared information. Professional staff members such as doctors, nurses, and social workers with special informational expertise can share it with your group when you invite them to participate in group meetings, by giving talks, making copies of important articles, and answering the many questions parents have. Professionals can also help build the groups value and effectiveness by portraying it to other parents as a important source of medical and related information. Informed and committed professionals can play an essential liaison and advocacy role for your group regarding the medical
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system and staff. They can inform other staff members of the existence and value of the group, establish meetings where group leaders can meet with and address the medical staff about their groups plans and activities, and otherwise help legitimize the group in the eyes of the staff. And they can perform the same general function with community-based agencies, including those that are potential sources of funds and resources for the parent group. We know that some children and parents have an especially difficult time coping with all the stresses of childhood cancer. Psychological and social work professionals may be of especially great assistance to these families, and the group can refer families in need of special treatment to these professionals. The same process may be useful for families facing severe financial problems who need the assistance of staff members with special knowledge of or contact with insurance agencies and public charities. Groups not only benefit from being able to call upon professionals in this way, but they also can benefit professionals by helping them do the jobs for which they were trained. These are some of the ways in which professionals can be helpful to local parent groups. Undoubtedly there are others, such as helping groups get organized or teaching group leaders how to be better leaders. Good relationships and communication with professional staff members may have many wonderful results.
Using the group to meet challenges

Professionals participation is welcomed, advice sought is appreciated, and assistance is gratefully received. But above all, parents and professionals agree it is important that professionals should be helpful to parent groups, as invited, and should not try to control a group or set the groups agenda. When that happens, the group belongs to the professional staff members: it becomes a professional group rather than a parent group, struggles for control begin, and the possibilities for meaningful cooperation are lost. Problems or opportunities? Some examples follow of troublesome or tricky issues and opportunities that have arisen between parent groups and hospital staffs. Think about how you and your group, or the professional staff members working with you, might best respond to these situations. Perhaps try them out in a practice session.
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Box 53. Situations for Discussion

Your support group meets outside the hospital and has been having difficulty discovering the names and addresses of newly diagnosed patients and their parents. Your support group feels it is having difficulty getting the staff to change procedures for the treatment of children with cancer in the general-purpose emergency room of the hospital. You have spoken with the pediatric/oncology social worker who comes to some group meetings, but so far nothing has happened. Parents in your group would like the opportunity to make a presentation to the pediatric residents and interns on the hospital staff. You have heard that these student physicians also want to hear from parents what it is like in the family of a child with cancer. Three parents, including yourself, are asked to make a half-hour presentation to a large group and then to be available for questions. The hospital director has announced that the pediatric oncology clinic is being shut down at the local hospital. In the future, children of parents in your group will be served in the hospital in the next city, thirty-five miles away. One of the nurses who is a regular member of the parent support group has missed the last two meetings. Moreover, she seems quite down, sad a lot and not willing to take the time to talk with parents or children on the wards as she usually does. She does her job, but thats about it. You really miss the personal warmth, outpouring of caring, and extra time and energy this nurse used to have available.
Ideas for working with professionals

There are a number of other ways groups of parents of children with cancer can involve professional staff members in productive ways in their work. Not all methods will be appropriate for each group, but many groups have tried these options successfully.
Box 54. Strategies for Working with Professionals

Advisory boards. A professional advisory board can lend credibility to a group, provide influential supporters within the professional community, and be a source of guidance and information for parents. Professional advisors, in turn, can learn through association with the group. They gain access to the attitudes and concerns of parents who may be individually not as communicative, and insight into patient/parent/family problems or needs. Study carefully the advantages and disadvantages of advisory boards. Be aware of how an advisory board may affect the groups independence. Be clear about the decision-making power advisors will exercise. Will they be figureheads, on-call resources, participants in problem solving, activists with leadership roles? Whatever is decided should be made clear to all parties so that there will be no conflict based on unclear expectations. This agreement may need to be reviewed from time to time. Outreach programs. Use competent wellinformed people in the group to speak to professional inservice and organizational gatherings. Try to find out who has the responsibility for such events; they are almost always seeking to enlarge their source of speakers. The group can help solve their scheduling problems and at the same time help their peers learn more about the needs of patients/families and the services the group offers as supplements to professional support. Outreach is an opportunity to spread positive information and feelings about the group while serving both the professionals and group.
Source: Nathanson, 1986, pp. 61-63.
Feedback to professionals
Professionals who feel good about the group will share this positive feeling with other professionals. Professionals who feel they have something to gain from group efforts are more likely to promote the group and have a vested interest in its success. So thank professionals for their efforts on the groups behalf. For instance, when a new family is referred to the group, a member of the group should call the referring person, let them
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know the contact was made, tell them how it went, and thank them. Ask parents who have been served by the group to tell nurses, doctors, or social workers about their positive contact. When professionals do share concerns about the group, dont be defensive. Acknowledge the potential problem, and try to create solutions that will avoid the problem in the future without sacrificing the groups goals. Ask the professionals advice. Its not necessary to follow the advice, but if it is rejected outright, communication may be closed off. Building a sense of partnership in this way creates good feelings. Making professionals jobs easier and helping them to help families promote the groups goals as well. If professionals know that the group supports them and their programs, they are more likely to feel like partners. Ask how the group can help them. Find out what their needs are and how the group can assist in meeting them. Dont forget that professionals, particularly those who work with seriously ill children, have personal needs also. They may be working in understaffed institutions, surrounded by crisis situations and emotionally draining circumstances, with long hours and minimal pay. Acknowledge their dedication and service. Something as simple as a birthday card, a wedding or baby gift or shower, or a public thank-you in the group newsletter goes a long way in giving professionals deserved recognition and creating good feelings. Giving professionals recognition and credit is likely to create smoother referral and cooperative arrangements. Thank them in the newsletter. Introduce them as supporters. Let fellow professionals know how helpful they have been. Everyone feels better about working with people who appreciate them. It may be necessary to search for something positive to say or even to ignore negative actions or lack of support. But giving praise or thanks for whatever positive support there is can produce surprising benefits. It can even turn a doubter into a supporter.
defensive or overinvolved. But their mutual success is dependent on what the medical staff as a whole decides to do. For instance, if the senior medical staff cannot support active and independent parent organizations, they will insist that the professionals on their staff try to control the parent group. On the other hand, if the senior medical staff does trust parents and parent initiatives, they will enthusiastically support professional linkage to these groups without such controls. Then both parents groups and medical staffs will join hands to influence the very structure of health care delivery and financing that affect children with cancer. Professor Guiseppe Masera, a pediatric oncologist in Italy, also talks about the needs for all these parties to work together in a coalition or therapeutic alliance. Box 55 shows how medical staff members, parents, and parent groups all are vital contributors to the total health of children with cancer and their families (Masera et al., 1998, p. 257).
Box 55. The Therapeutic Alliance

Childhood Cancer
Family
Health Professionals
Alliance CCCF National and Local Institutions
Coalitions and alliances!?

Parents and professional staff members must work together to create and sustain effective groups for parents of children with cancer. But there often are barriers and conflicts to your ability to work closely togetherconflicts based upon the essential differences in roles and life situations, as well as backgrounds and resources. It is important for parents and professionals not to overemphasize their differences so much so that they separate from one another and engage in mutually antagonistic relations. It also is important for everyone to understand their differences and avoid professional control of groups that should be run by and for parents. Collaborative relationships can be built on the base of both commonalties and differences and can take the form of a coalition or an alliance. Coalitions and alliances can work when parents create strong and active groups that advocate strongly and effectively for their own interests and for those of their members, and when professionals can support and advocate for these groups without feeling
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Volunteers
Society
Cure
Normal Life
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Appendix A: Resources for Your Group and Its Members

(Source: adapted from A Helping Hand, 1996.)
American Kidney Fund
AMC Cancer Research CenterCancer Information and Counseling Line

1600 Pierce St. Denver, CO 80214 (800) 525-3777, (303) 239-3424
6110 Executive Boulevard, Suite 1010 Rockville, MD 20852 (800) 638-8299 The American Kidney Fund provides financial assistance to people with kidney cancer or other kidney diseases and helps them find appropriate doctors and medical services.
AMC-CRC provides up-to-date facts about all aspects of cancer prevention, detection, diagnosis, treatment, and rehabilitation. Services include the Cancer Information and Counseling Line, where callers speak to trained professionals.
Association for Brain Tumor Research

2910 W. Montrose Ave. Chicago, IL 60618 (312) 286-5571
American Brain Tumor Association
2720 River Rd., Suite 146 Des Plaines, IL 60018-4110 (800) 886-2282, (847) 827-9910, fax (847) 827-9918 E-mail: ABTA@aol.com Web page: http://www.abta.org ABTA is a national organization that helps people with brain tumors. Services include a listing of support groups, a pen pal program, a newsletter, information on treatment facilities, and funding for research.
The Association for Brain Tumor Research is a nonprofit organization dedicated to providing information to patients and their families and to increasing public awareness of the prevalence of brain tumors, particularly those in children and young adults. In addition, the Association offers several free booklets and brochures on all types of brain tumors, methods of treatment, ideas on coping, what to consider when sending a child back to school, and a computerized listing of major research and treatment centers.
American Cancer Society National Office
1599 Clifton Road, NE Atlanta, GA 30329 (800) ACS-2345 available Monday through Friday from 9:00 a.m. to 5:00 p.m. EST Web page: http://www.cancer.org The American Cancer Society is a national community-based voluntary health organization that funds research and offers programs in education and patient services. The American Cancer Society also offers assistance with transportation and lodging, support groups, workshops and handbooks for school reentry, camps for children with cancer, equipment and supplies not covered by health insurance (hospital beds, pillows, wheelchairs, wigs, and prostheses), and advocacy. In addition, some American Cancer Society Units are willing to help parent support groups by arranging and/or sponsoring guest speakers, providing office space for meetings, printing and distributing group newsletters and brochures, providing referrals, and providing members with training in leadership skills. The Information Line provides free publications regarding diagnosis, treatment, and nutrition.
Association for the Care of Childrens Health

3615 Wisconsin Avenue, NW Washington, DC 20016 (202) 244-1801
Blood and Marrow Transplant Newsletter

2900 Skokie Valley Road Highland Park, IL 60035 (847) 831-3313, (800) 597-7674, fax (847) 433-4599 E-mail: bmtnews@transit.nyser.net Web page: http://www.bmtnews.org
The BMT newsletter is a bimonthly newsletter and clearinghouse for bone marrow transplant patient services, which include legal assistance, insurance information and assistance, a patient survivor phone link service, and cancer information.
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Bone Marrow Transplant Family Support Network

P.O. Box 845 Avon, CT 06001 (800) 826-9376
The Bone Marrow Transplant Family Support Network is a person-to-person telephone support network that connects diagnosed cancer patients to recovered BMT patients with similar diagnosis and treatment. Other services include family cancer counseling, self-help/peer groups, and insurance information and assistance.
3910 Warner Street Kensington, MD 20895 (800) 366-2223, (301) 962-3520, fax (301) 962-3521 E-mail: info@candlelighters.org Web page: http://www.candlelighters.org
CHEMOcare
231 North Ave., West Westfield, NJ 07090-1428 (800) 55-CHEMO, (908) 233-1103 CHEMOcare runs a telephone support network that connects people undergoing chemotherapy and/or radiation therapy with others who have gone through it. Other services include a newsletter, volunteer training programs, peer counseling for individuals and families, advocacy, a speakers bureau, and a toll-free information number.
Brain Tumor Foundation for Children, Inc.

2231 Perimeter Park Drive, Suite 9 Atlanta, GA 30341 (770) 458-5554
The Brain Tumor Foundation for Children is a nonprofit organization that provides patient services, education, research, and grants for children with brain tumors. Services include family support and education programs, public awareness and information activities, a telephone support network, and regular meetings and recreational events.
Childhood Cancer Ombudsman Program

P.O. Box 595 Burgess, VA 22432 fax (804) 580-2502 E-mail: gpmonaco@rivnet.net
Cancer Care, Inc.
1180 Avenue of the Americas New York, NY 10036 (212) 302-2400 (National Office), (800) 813-HOPE E-mail: cancercare@aol.com Web page: http://www.cancercareinc.org Cancer Care, Inc., is a nonprofit organization that helps people with cancer and their families. Services include professional one-to-one counseling, support groups, educational programs, workshops, and teleconferences, all free of charge. The professional one-to-one counseling and support groups are available nationwide over a toll-free line (1-800-813-HOPE).
The Childhood Cancer Ombudsman Program is a service that provides help for families of children with cancer who are experiencing insurance or discrimination problems.
Childrens Brain Tumor Foundation

274 Madison Avenue, Suite 1301 New York, NY 10016 (212) 448-9494, fax (212) 448-1022 Web page: http://www.childrensneuronet.org
Cancer Fund of America

2901 Breezewood Lane Knoxville, TN 37921-1099 (800) 578-5284, (423) 938-5281
The Childrens Brain Tumor Foundation is a nonprofit organization that funds basic research on pediatric brain tumors. Other services include a monthly support group for parents with a child with a brain or spinal cord tumor, a resource guide, and a newsletter.
The Cancer Fund of America helps defray cancer-related expenses not covered by insurance, e.g. transportation, prescriptions, nutritional products, and home health supplies. The average grant is $50.00. Financial assistance is also available for hospice care.
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Childrens Hospice International
2202 Mt. Vernon Ave., Suite 3C Alexandria, VA 22301 (800) 24-CHILD, (703) 684-0030, fax (703) 684-0226 E-mail: chiorg@aol.com Web page: http://www.chionline.org Childrens Hospice International is a nonprofit organization that works to improve hospice care for children. Their services include an information and referral service for child care, counseling, support groups, pain management, professional education, and research.
have local groups around the United States, and they publish books, newsletters, and brochures.
Cure for Lymphoma Foundation
215 Lexington Avenue New York, NY 10016 (800) CFL-6848, (212) 213-9595, fax (212) 213-1987 E-mail: InfoCFL@cfl.org Web page: http://www.cfl.org The Cure for Lymphoma Foundation raises money for lymphoma medical research and provides support and education for lymphoma patients and families. Services include a patient-to-patient telephone network, a library, and a newsletter.
Childrens Oncology Camping Association

909 E. Brill Phoenix, AZ 85006 (800) 737-2667 E-mail: jlockro@phxchildrens.com Web page: http://www.coca-intl.org
The Disability Rights Education and Defense Fund

2212 Sixth Street Berkeley, CA 94710 (800) 466-4232
Childrens Organ Transplant Association, Inc.

2501 COTA Drive Bloomington, IN 47403 (800) 366-2682 E-mail: cota@cota.org Web page: http://www.cota.org/
This Fund provides information about the Americans with Disabilities Act.
The Dougy Center for Grieving Children

3909 S.E. 52nd Avenue P.O. Box 86852 Portland, OR 97286 (503) 775-5683, fax (503) 777-3097 Web page: http://www.dougy.org
The Childrens Organ Transplant Association is a nonprofit organization that provides support and financial assistance to children who need an organ transplant. Their services include a speakers bureau, cancer information, and a toll-free information line. COTA also offers guidance to those who are working to raise funds for a transplant or transfusion.
This Center is an excellent resource for information and advice regarding grief support to children.
The Chronicle of Philanthropy

P.O. Box 1989 Marion, OH 42206-2089 (800) 728-2819
Federation for Children with Special Needs

312 Stuart Street, 2nd Floor Boston, MA 02116 (617) 482-2915
This organization provides information using a newspaper format.
The Foundation Center

79 5th Avenue/16th Street New York, NY 10003 (800) 424-9836
The Compassionate Friends, Inc.

P.O. Box 3696 Oak Brook, IL 60522-3696 (630) 990-0010, fax (630) 990-0246 E-mail: tcf_national@prodigy.com Web page: http://www.compassionatefriends.org/
This organization provides fund-raising directories.
Grantsmanship Center
1031 South Grand Avenue Los Angeles, CA 90015
The Compassionate Friends is a self-help organization offering support and information to bereaved parents and siblings. They
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Hill-Burton Free Hospital Care

5600 Fishers Lane, Room 7-47 Rockville MD 20857 (800) 638-0742
Make-A-Wish Foundation
National Office 100 West Clarendon, Suite 2200 Phoenix, AZ 85013-3518 (800) 722-WISH, fax (602) 279-0855 E-mail: mawfa@wish.org Web page: http://www.wish.org
The Hill-Burton program is run by the federal government and can arrange for certain medical facilities or hospitals to provide patients with free or low-cost care.
Institute for Families of Blind Children

P.O. Box 54700 (MS #111) Los Angeles, CA 90054-0700 (213) 669-4649
The Make-A-Wish Foundation is a nonprofit foundation that grants special wishes to children up to the age of 18 who have life-threatening illness.
The Institute provides information to families whose children are diagnosed with retinoblastoma (or other illnesses) with resulting visual impairment.
Make Today CountMid-America Cancer Center

1235 E. Cherokee Springfield, MO 65804 (800) 432-2273
The Learning Disabilities Association

4156 Library Road Pittsburgh, PA 15234-1349 (412) 341-1515, fax (412) 344-0224 Web page: http://ldanatl.org
Make Today Count is a mutual support organization that brings together people with life-threatening illnesses. Their services include cancer counseling and general counseling.
National Bone Marrow Transplant Link

29209 Northwestern Highway, #624 Southfield, MI 48034 (810) 932-8483, (800) LINK-BMT Web page: http://www.connect.org/nbmtlink
Leukemia Society of America

600 Third Ave. New York, NY 10016 (800) 955-4LSA Web page: http://www.leukemia.org
The Leukemia Society is a national voluntary health agency dedicated to fighting leukemia and its related diseases (all lymphomas, including Hodgkins disease, and multiple myeloma). Services include a volunteer peer support program (called First Connection), family support groups, financial assistance, a speakers bureau, professional education programs, research grants, recreational activities, and a toll-free number.
BMT-Link promotes public understanding and peer support of BMT and serves as a national clearinghouse on a variety of BMTrelated issues. Their services include patient advocacy and research.
National Brain Tumor Foundation

785 Market St., Suite 1600 San Francisco, CA 94103 (800) 934-CURE E-mail: nbtf@braintumor.org Web page: http://www.braintumor.org
Lisa Madonia Memorial Fund

943 N. East Avenue Oak Park, IL 60302 (708) 524-4879
The Lisa Madonia Fund grants special wishes to 18-to-25-yearolds with cancer. Applications can be obtained by patient caregivers, family, or friends. Write or call for more information.
The National Brain Tumor Foundation provides funds for medical research, free information to the public, and counseling and support services to brain tumor patients, survivors, and their families. Other services include a newsletter, a patient-to-patient telephone support line, a free resource guide, and a list of support groups.
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National Cancer Institute

Office of Cancer Communication Building 31, Room 10A24 9000 Rockville Pike Bethesda, MD 20892 (800) 4-CANCER, (301) 496-5583 E-mail: Cancernet@icicb.nci.nih.gov Web page: http://www.nci.nih.gov/
National Coalition for Cancer Survivorship

1010 Wayne Ave., Suite 505 Silver Spring, MD 20910-5600 (888)YES-NCCS, fax (301) 565-9670 E-mail: info@cansearch.org Web page: http://www.cansearch.org
The National Cancer Institute is the U.S. government agency responsible for conducting and supporting research on cancer. Their services include a cancer information hotline (1-800-4CANCER), which is staffed by trained volunteers and professionals who can answer your questions about causes, diagnosis, treatment, rehabilitation, referrals, and other matters relating to cancer. In addition, you can order free information materials.
The National Coalition of Cancer Survivorship is a network of groups and individuals promoting national awareness of issues affecting cancer survivors, and the development of support services and help for cancer survivors. Services include advocacy and public education.
National Family Caregivers Association

10605 Concord St., Suite 501 Kensington, MD 20895-2504 (800) 896-3650, fax (301) 942-2302 E-mail: info@nfcacares.org Web page: http://www.nfcares.org/
National Center for Education in Maternal and Child Health

38th and R Streets, NW Georgetown University Washington, DC 20057 (202) 625-8400 E-mail: pfs@children-cancer.com Web page: http://www.ncemch.org/
The National Family Caregivers Association provides research, education, support, respite care, and advocacy for caregivers. Their services include counseling support groups, professional education, and a toll-free information line.
National Foundation for Transplants National Center for Nonprofit Boards

2000 L Street, NW, Suite 510 Washington, DC 20036-4907 (202) 452-6262
1102 Brookfield, Suite 200 Memphis, TN 38119 (800) 489-FUND, (901) 684-1697, fax (901) 684-1128 E-mail: nftpr@aol.com Web page: http://www.otf.org The Organ Transplant Fund gives financial assistance to U.S. residents for transplants and assists in developing a fund-raising campaign. Its Support Program offers practical help with arrangements, advocacy, and support groups.
This organization provides training publications.
National Children and Adults with Attention Deficit/Hyperactivity Disorder (CHADD)

8181 Professional Place, Suite 201 Landover, MD 20785 (800) 233-4050, (301) 306-7070, fax (301) 306-7090 E-mail: national@chadd.org Web page: http://www.chadd.org
National Hospice Organization
National Childrens Cancer Society

1015 Locust St., Suite 1040 St. Louis, MO 63101 (800) 5-FAMILY, fax (314) 241-6949
1901 N. Moore St., Suite 901 Arlington, VA 22209-1714 (800) 658-8898, (703) 243-5900, fax (703) 525-5762 E-mail: webmaster@nho.org Web page: http://www.nho.org The National Hospice Organization provides information and referrals to local hospice programs via a toll-free phone number. Other services include patient advocacy and professional education.
The National Childrens Cancer Society assists children in need of and/or going through a bone marrow transplant. Their services include financial assistance, insurance information and assistance, patient advocacy, a toll-free information line, and a bone marrow registry.
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National Information Center for Children and Youth with Disabilities (NICHCY)
P. O. Box 1492 Washington, DC 20013-1492 (800) 695-0285, (202) 884-8200, fax (202) 884-8441 E-mail: nichcy@aed.org Web page: http://www.nichcy.org
Ronald McDonald House Charities
One Kroc Drive Oak Brook, IL 60521 (708) 575-7048 Web page: http://www.mcdonalds.com/community/rmhc/ Ronald McDonald Houses are a national network of temporary housing facilities for families of children hospitalized with lifethreatening illnesses. They are located near the hospital and are relatively inexpensive. To stay in one of the houses, you usually need a referral from the social worker at the local treatment center. Call Ronald McDonald House Charities for locations, service information, and eligibility.
The National Information Center for Children and Youth with Disabilities provides information and referrals on disabilities and disability-related issues for children and youth, and for families, educators, and other professionals working with children and youth with disabilities.
National Kidney Cancer Association

1234 Sherman Ave. Evanston, IL 60202 (708) 332-1051
Starlight Foundation
1560 Broadway, Suite 402 New York, NY 10036 (212) 354-2878 Web page: http://www.starlight.org/ The Starlight Foundation is a nonprofit voluntary organization that grants special wishes to critically, chronically, and/or terminally ill children ages 4-18. It also provides in-hospital entertainment.
The National Kidney Cancer Association provides information, research funding, advocacy, a booklet We Have Kidney Cancer, and a newsletter.
National Neurofibromatosis Foundation

95 Pine Street, 16th Floor New York, NY 10005 (800) 323-7938 E-mail: nnff@nf.org Web page: http://www.nf.org
Sunshine Foundation
National Patient Air Transport Hotline

P.O. Box 1940 Manassass, VA 22110 (800) 296-1212, (757) 318-9145 E-mail: npathmsg@aol.com Web page: http://www.npath.org/
Northern Regional Office 2001 Bridge Street Philadelphia, PA 19124 (941) 424-4188 Web page: http://www.sunshinefoundation.org/ The Sunshine Foundation is a nonprofit organization that grants special wishes to children ages 3-21 who are terminally and chronically ill and whose families are under financial strain due to the childs illness.
The National Patient Air Transport Hotline is a clearinghouse for patients who need but cannot afford travel for medical care. They make referrals to all known appropriate charitable, charitably assisted, and special patient discount commercial air transport services.
U.S. Department of Education
Publications for Parents Web page: http://www.ed.gov/pubs/parents.html
Neuroblastoma Childrens Cancer Society

P.O. Box 957672 Hoffman Estates, IL 60195 (800) 532-5162, fax (847) 490-0705 E-mail: nccs@aol.com Web page: http://www.granitewebworks.com/nccs/htm
The Neuroblastoma Childrens Cancer Society provides education, support, advocacy, and funding for research in neuroblastoma.
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Appendix B: References and Recommended Reading
his list includes materials referenced or cited throughout this SOURCEBOOK, as well as other items that will be useful reading for support group organizers and leaders. Italicized annotations are provided for recommended readings, whether or not they have been cited previously. They should be available from bookstores, libraries or the agencies that published them. A Helping Hand. 1996. New York, NY: Cancer Care, Inc. Action Against Cancer: How You Can be an Advocate for Change. 1996. Washington, DC: Center for the Advancement of Health. Adams, D., and E. Deveau. 1993. Coping with Childhood Cancer: Where Do We Go from Here? Revised ed. Hamilton, ON: Kingbridge. A basic reference and self-help guide that covers diagnosis, treatment, remission, long-term survival, relapse, childrens knowledge of death, dying, surviving grief, and finding new directions. Includes appendices on chemotherapy, a glossary, and a bibliography. Barbarin, O., and M. Chesler. 1983. Children with Cancer: School Experiences and Views of Parents, Educators, Adolescents and Physicians. Oak Brook, IL: Eterna Press. Bogue, E., and B. Chesney. 1987. Making Contact: A Parent-toParent Visitation Manual. Bethesda, MD: Candlelighters Childhood Cancer Foundation. Explains the why and how of parent-to-parent visitation. It includes information about designing a volunteer program and a training guide for visitors. Cancer-Treated Children at Greatest Risk for Educational Complications (Hematology-Oncology Educational Liaison Program, University of Rochester Medical Center). 1993. In P. Deasy-Spinetta & E. Irvin, eds., Educating the Child with Cancer. Bethesda, MD: Candlelighters Childhood Cancer Foundation. Candlelighters Bibliography and Resource Guide. 1994. Bethesda, MD: Candlelighters Childhood Cancer Foundation. A useful listing and annotation of sources of information for parents and professionals dealing with childhood cancer. Candlelighters Canada Parent Support Group Resource Manual. n.d. Toronto, ON: Childhood Cancer FoundationCanada. A useful guide to the formation and maintenance of support groups for families of children with cancer.
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Candlelighters Childhood Cancer Foundation Quarterly Newsletter. Bethesda, MD: Candlelighters Childhood Cancer Foundation. Candlelighters Childhood Cancer Foundation Youth Newsletter. Bethesda, MD: Candlelighters Childhood Cancer Foundation. Checkoway, B. n.d. Young People Creating Community Change. Battle Creek, MI: W.K. Kellogg Foundation. Chesler, M., J. Allswede, and O. Barbarin. 1991. Siblings of Children with Cancer. Journal of Psychosocial Oncology. 9 (4), 19-42. Chesler, M., and O. Barbarin. 1987. Childhood Cancer and the Family. New York, NY: Brunner/Mazel. A research-based discussion of the major psychosocial stresses impacting upon families of children with cancer, and how families cope with and get support from friends, family members, and medical and school staffs. Chesler, M., and B. Chesney. 1995. Cancer and Self-Help: Bridging the Troubled Waters of Childhood Illness. Madison, WI: University of Wisconsin Press. An analysis based on research with over fifty local self-help and support groups for families of children with cancer, this book provides extensive information about how self-help groups function, what services they offer, why they are effective, and how they can be created and maintained. Chesler, N. 1995. Siblings: Having Our Say. Candlelighters Childhood Cancer Foundation Quarterly Newsletter. Bethesda, MD: Candlelighters Childhood Cancer Foundation. Crowfoot, J., B. Bryant, and M. Chesler. 1982. Action for Educational Equity. Boston, MA: Institute for Responsive Education. An organizing manual written for parents and members of community groups seeking to combat racial segregation/discrimination and advocate for change in local schools. Deasy-Spinetta, P., and E. Irvin, eds. 1993. Educating the Child with Cancer. Bethesda, MD: Candlelighters Childhood Cancer Foundation. Written for parents, it contains chapters on school re-entry, communication between medical professionals, parents, and school personnel, cognitive late effects; laws, and siblings. Includes a glossary and list of resources.
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Families of Children with Cancer Newsletter. 1997 (Spring). Toronto, ON. Family Support Group Guidelines. 1986. New York, NY: Leukemia Society of America. A guide written by and for human service professionals on how to establish and monitor support groups for leukemia patients. Fiduccia, D. 1993. Introduction to the Americans with Disabilities Act: A Guide for Families of Children with Cancer and Survivors of Childhood Cancer. Bethesda, MD: Candlelighters Childhood Cancer Foundation. Describes the rights of survivors and their families in the areas of employment, schooling, and insurance. Includes information about housing, public accommodations, and transportation. Guidelines on Self-Help and Mutual Support Groups. 1984. Atlanta, GA: American Cancer Society. A guide written for medical and human service professionals on how to work with and monitor support groups for cancer patients and their families. Helping People Help Each Other. 1982. Denville, NJ: Self-Help Clearinghouse. Hill, K. 1984. Helping You Helps Me: A Guide Book for Self-Help Groups. Ottawa, ON: Canadian Council on Social Development. How to Start a Self-Help Support Group. 1984. Olney, MD: New Beginnings Inc. Johnson, L., and E. ODonnell, eds. 1994. The Candlelighters Guide to Bone Marrow Transplants in Children. Bethesda, MD: Candlelighters Childhood Cancer Foundation. An easily readable and relevant series of articles written by parents and professionals, focusing on medical and practical issues involved in the continued and effective schooling and support for children with cancer. Keene, N. 1997, Childhood Leukemia: A Guide for Families, Friends and Caregivers. Sebastapol, CA: OReilly and Associates. A commonsense and very readable resource for families, this book covers a range of medical and psychosocial issues facing families of children with leukemia . . . relevant for families dealing with other forms of childhood cancer as well. Kurtz, L. 1997. Self-Help and Support Groups: A Handbook for Practitioners. Thousand Oaks, CA: Sage Publications. A practical guide written for human service and medical professionals, offering advice on how they can best understand, support and work with a wide variety of support groups.
Leff, P., and E. Walizer. 1992. Building the Healing Partnership: Parents, Professionals, and Children with Chronic Illness and Disabilities. Cambridge, MA: Brookline Books. A useful resource for both parents and professionals, providing insights to help everyone working with children with special needs understand the other side of health care. Lozowski, S. 1998. Know Before You Go. Bethesda, MD: Candlelighters Childhood Cancer Foundation. A practical guide for families experiencing childhood cancer, with special emphasis on financial and insurance issues and the needs of families who have to travel long distances for treatment. Masera, G., et al. 1998. Guidelines for a Therapeutic Alliance between Families and Staff. ICCCPO Newsletter. 5 (2), 3-5. Mullan, F., and B. Hoffman, eds. 1990. Charting the Journey: An Almanac of Practical Resources for Cancer Survivors. Mount Vernon, NY: Consumers Union. Contains facts about cancer and its treatment, stories and poems by cancer survivors, information about how to obtain and retain employment and insurance, information on peer support, and a complete guide to all aspects of coping with diagnosis and survival. Naafs-Wilstra, M., and C. van den Hoed-Heerschop. 1997. The Dutch Parent Organization. ICCCPO Newsletter. 4(2), 3-5. Nathanson, M. 1986. Organizing and Maintaining Support Groups for Parents of Children with Chronic Illness and Handicapping Conditions. Bethesda, MD: Association for the Care of Childrens Health. A handbook offering information for parents forming new groups, maintaining ongoing groups, or struggling to revive fading groups. It covers patient, parent, and family needs, group roles, philosophy, operation, activities, formation, organization, structure, relationships to professionals, larger organizations, and parent coalitions. OBrien, M. 1996. Parents and Children Fighting Cancer Newsletter. Washington, DC. Parent/Child Handbook in Pediatric Oncology. 1998. Rochester, NY: Strong Memorial Hospital and CURE. Sanford, G. 1984. Basic Conflict Reduction Procedure. Candlelighters Childhood Cancer Foundation Quarterly Newsletter. Washington, DC: Candlelighters Childhood Cancer Foundation.
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Taylor, A. 1997. Poem. Candlelighters Childhood Cancer Foundation Quarterly Newsletter. Bethesda, MD: Candlelighters Childhood Cancer Foundation. The Foundation Directory: Parts I, II, III. 1999. New York, NY: The Foundation Center. The Main Vein. Bethesda, MD: Candlelighters Childhood Cancer Foundation. Van Clieaf, J., and S. Smithson. 1997. The Computerized Parent Guide at HSC (Hospital for Sick Children). Families of Children with Cancer News. Toronto, ON. Watchhurst, T. 1997. The FCC Library. Families of Children with Cancer News. Toronto, ON. We Need Not Walk Alone: After the Death of a Child. 1992. Oak Brook, IL: The Compassionate Friends. Contains selections from the publications of TCF in which bereaved parents, siblings, and grandparents write about their personal grief experiences in poetry and prose. White, B., and E. Madera. 1992. The Self-Help Sourcebook. 4th ed. Riverside, NJ: St. Clare-Riverside Medical Center. Young People with Cancer: A Handbook for Parents. 1986. Bethesda, MD: National Institutes of HealthNational Cancer Institute. Describes individual diseases and treatment, common health issues, and how to cope with diagnosis and continuing life. Contains sources of information, support and assistance, foldout charts on tips for clinic visits and medical procedures, information about when to call your doctor, and information about the administration and side effects of various drugs. Includes a bibliography and a glossary.
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Appendix C: Sample Forms, Materials, and Documents

Group Guidelines Sample Letter for Making Contact with Source Referrals Fundraising Letter, Candlelighters of Brevard, Inc. (Florida) Descriptive Materials from CURE Childhood Cancer Association, Rochester, N.Y. Sample Bylaws (Nathanson, 1986) Financial Guidelines, Chattanooga Candlelighters Family Support Group (Tennessee) (CCCF Quarterly) Family Financial Guidelines, Candlelighters of Brevard, Inc. (Florida) Donation Thank You Letter, National CCCF Office Invitation to a Mothers Day Tea Party of the Candlelighters of Brevard, Inc. (Florida) Corporate Fund-Raising Application, Candlelighters Childhood Cancer Family Alliance (Houston, Texas) Board of Directors Responsibilities, Candlelighters Childhood Cancer Family Alliance (Houston, Texas)
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Group Guidelines
We know that what we share about our personal lives is confidential. What is said in the group, stays in the group. Each person has the right to take part in any discussion or not.
We share responsibility for making the group work. We encourage group members to share their strengths, skills, successes, and hopes. Each members right to anonymity is respected. We encourage I statements so that everyone speaks for himor herself.
The primary responsibility of the group leader is to ensure that the group is a safe place for its members to disclose their personal stories, fears, etc.
We recognize that there are no right or wrong answers or feelings. We make an effort to consider others and be nonjudgmental and nonprying.
It is recognized that the leader is not the expert.
It is important that we actively listen when someone is talking and avoid having side conversations.
Having benefited from the help of others, we recognize the need for offering our help to others in the group.
We try not to discuss persons who are not present.
Source: White and Madera, 1992.

3910 Warner Street, Kensington, MD 20895, 1-800-366-CCCF, (301) 962-3520, (301) 962-3521 fax E-mail: info@candlelighters.org Website: http://www.candlelighters.org
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Sample Letter for Making Contact with Source of Referrals
Group Stationery (if available)
(Address) (Date) Dear (Name), Allow us to introduce ourselves. We are the Hometown Candlelighters, a parent group for families of children with cancer. Because of our experiences, we have some understanding of the challenges that parents face when one of their children is diagnosed with cancer. For this reason, we want to be available to other parents who are struggling with the social, emotional, practical, informational, and spiritual challenges of being the parent of a child with cancer.
We hope that you will join us in our effort to help families of children with cancer by passing out the attached brochures to parents who may be interested in talking with another parent whose child has cancer. If you would like further information about our group or more brochures, please call the Hometown Candlelighters office at (telephone number).
Sincerely, (Name) Hometown Candlelighters

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CURE Childhood Cancer Association

The CURE Childhood Cancer Association was founded in 1976 by parents and concerned medical personnel from Strong Memorial Hospital. CURE is a legally chartered nonprofit corporation in the State of New York. One of the primary objectives of CURE is to provide support to you and your child. CURE members volunteer in the Pediatric Playroom so that they may make the waiting time spent with your child more pleasant. Our volunteers look forward to visiting with you and your child and will be happy to answer any questions you may have regarding our organization and its purposes. This Handbook has been sponsored and created with the support of CURE members working closely with Strong Memorial Hospital Medical personnel. We welcome any suggestions from you regarding ways in which the format or content can be improved. The creation of CURE happened as a result of the generous spirit of those parents whose children have had cancer and gone through the Pediatric Oncology Program at Strong Memorial Hospital. The word CURE symbolizes the ultimate dream of all who care for children with cancereach letter has significance to our organization, as defined by one of our founding members, Mrs. Judith Sturge. chance to ask questions and receive answers to many problem areas in which complete information is not always available. While CURE is an independent organization, it is affiliated with Candlelighters, a national organization of parent groups. Candlelighters work in Washington, DC, to obtain federal funding for cancer research and provides a communication link to all groups through a national quarterly newsletter and parents conference. CURE is an organization to help you. You may not ask for our help . . . we ask you . . . isnt there something we can do?
Major projects supported by CURE are:

1. The Agnes K. Mackey Endowment Fund was established by CURE in 1982 to assist patients and families with unforeseen expenses not covered by other resources. Referrals for use of the fund can be made through the Clinic staff and confidentiality will be strictly observed. 2. Discussion groups to meet the needs of the family, be it for families who have a child undergoing treatment, grandparents and bereaved parents. Specific information about time and place for the discussion groups is available through any of the Nurse Practitioners. 3. The Parent-to-Parent program that is designed to make a formal link between newly diagnosed families and other parents whose children have previously received treatment. Parent volunteers who participate in this program engage in training and follow-up seminars during the year. 4. Publication of this Parent/Child Handbook with information pertinent to the well-being of the child and his/her family. A copy of this book is given to each newly diagnosed family. 5. Publications of a Newsletter presenting activities of CURE and other groups supporting these families as well as updates on relevant medical information. 6. Sponsorship of fund-raising events to benefit families and hospital staff. 7. Sponsorship of an educational speaker series on topics related to childhood cancer and other chronic childhood illnesses. 8. Organizing volunteers to support the child in the Pediatric Hematology/Oncology Division. 9. Providing a ready petty cash reserve to help families in emergencies. 10. Providing television and parking for newly diagnosed families during their initial admission and as indicated. 11. Sponsorship of many family-oriented recreational events throughout the year, including a family picnic. 12. CUREs monthly business meetings which are held on the third Tuesday of each month at 7:00 p.m. Contact one of the Nurses for specific meeting places or call 325-1662 or 482-6142.
Counseling
This Handbook is a key aspect of CUREs counseling roleit attempts to cover many of the questions and concerns that arise and provides help in addition to the other available resources.
Understanding
CURE provides personal assistance in the clinic. As we stated aboveour objective is to be there when necessary to help support and provide understanding. ON the following pages is a partial list of CURE members who would like to be called if you have concerns which they might help you with.
Research
CURE provides funds for childhood cancer research, principally at Strong Memorial Hospital. The Medical Advisory Board of Strong Memorial Hospital Personnel helps to prioritize and allocate these funds that are donated for research and clinical study programs.
Education
Our Speaker Series attempts to provide the public, parents, and the medical community with information concerning childhood cancer. It is conducted on an announced basis and features medical staff of Strong Memorial Hospital or other pediatric oncology institutions. Our objective is to provide parents with an opportunity to interact directly with the people who care for their children and to give them a
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Sample Bylaws
Article I: Name and Purpose Section 1. This organization shall be known as Hometown Candlelighters Parents. Section 2. The purpose of Hometown Candlelighters Parents shall be: a to provide encouragement, hope, and help to children with cancer and their families through support services and education; b to promote public and professional recognition of, research in, and application of such research to the special needs of these children and their families and to the control and cure of childhood cancer; and c to affiliate through sharing these purposes with others in the Candlelighters Childhood Cancer Foundation network. Article II: Membership Section 1. Members of families with children who have or have had cancer and any other person who shares the purposes and goals of Hometown Candlelighters Parents shall be eligible for membership. Only family members of children with cancer, including adult survivors of childhood cancer, shall have voting membership, or be eligible to hold office or to serve on the Executive Committee. Section 2. Any member may be expelled for actions detrimental to the goals of Hometown Parents if an Executive Committee recommendation for expulsion is approved by a three-fourths vote of members at a regular meeting. Article III: Officers Section 1. The Officers shall be a President, Vice President, Treasurer, and Secretary, all of whom shall be elected for one-year terms. In addition to the usual responsibilities and authorities of these Offices, the Secretary shall prepare an annual report of activities and the Treasurer, an annual financial report. Section 2. The elected Officers and the Committee Chairpersons shall be designated as the Executive Committee, which shall meet periodically. A majority of the Executive Committee shall constitute a quorum. The Executive Committee shall have full power to act for the Hometown Candlelighters Parents when such action shall be subject to revision by a majority of the members voting at a regular meeting. Section 3. A vacancy in any Office or on the Executive Committee shall be filled for the remainder of the term by an interim appointment by the Executive Committee. An Officer may be removed from office upon recommendation of the Executive Committee and a three-fourths vote of members voting at a regular meeting.
Section 4.
Article IV: Elections Section 1. Elections of Officers shall be held at the annual meeting. Section 2. Nominations for Officers shall be made by a Nominating Committee appointed by the Executive Committee. Nominations may also be made from the floor by any voting member. Section 3. A majority of members voting shall decide all elections. In the case of a tie, the President, or the Presiding Officer, shall cast the deciding vote. Article V: Meetings Section 1. An annual business meeting and any other meetings shall be held at times and places designated by the Executive Committee. Section 2. A meeting shall be called by the President when requested by at least ten voting members. Section 3. Members shall be given at least fourteen days written notice of the time, place, and the scheduled business to be considered at all meetings. Article VI: Committees Section 1. The Executive Committee may establish committees for various purposes. Committee Chairpersons shall be appointed by the President with the advice and consent of the Executive Committee. All committees and chairs shall terminate at the annual meeting upon the election of new Officers but may be reappointed. Article VII: Amendments Section 1. Amendments to these bylaws may be proposed by the Executive Committee or by petition of ten voting members. An amendment must be adopted by a two-thirds vote of the members voting at any regularly or specially called meeting, provided that prior notice has been included in the call of the meeting.

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Financial Guidelines
The Financial Support Group funds are received through charitable donations and fundraising efforts and governed by a five-member board; it takes the signature and concurrence of at least two members to disburse funds. The intent and purpose is to alleviate the financial strain caused by the illness of the child with cancer. Our main concern is the essentials of living: food, shelter, care of siblings, transportation for treatment. Each case is considered on its own merit. Each request for payment of household expenses will be verified and checks will not be written to the patient family but rather to whom the bill is owed. An amount of $2,000 per three-year normal illness will not be exceeded except by concurrence of the entire board; however, each request will be given a fair and compassionate consideration. Patients treated in centers where housing and transportation are additional expenses to the family will be given special consideration. Our main concern is that the child receive necessary treatment.
Miscellaneous
Food is considered above all other factors. A maximum of $50 per week while patient and family are at home will be considered. Food for families at treatment centers will be considered on an individual basis. Patient families are encouraged to use meal tickets at treatment centers to supplement Candlelighters contributions. A maximum of $25 per week will apply toward the maximum amount. No cigarettes or alcoholic beverages are to be purchased with the groceries certificates. Prescribed medicine for the cancer patient or the sole caregiver, if not provided by the treatment center, will not apply toward the maximum. Payment for childcare for siblings only during a childs treatment time will apply toward the maximum. Volunteers will be sought from family, friends, church, support groups before payment is made.
Travel/Housing
Initial transportation to treatment centers at the time of diagnosis will be paid when requested; however, airline tickets will only be purchased when it is deemed a medical necessity for the patient to fly or if it is impossible for the family to obtain a safe vehicle to drive. Families will be given a maximum of $100 for general expenses in reaching the treatment center. This amount given at the time of diagnosis will not be applied toward the maximum amount. Housing shall be obtained in the facilities provided by treatment center where applicable. In cases where Ronald McDonald Houses are available, contact will be made through social services to obtain a lowered rate if possible. Special consideration where neither option is open will be given. Transportation after induction treatment will be considered on the merit of each case and treatment centers but will be applied toward the maximum. A patient whole illness exceeds the parameters of a normal illness will be given special consideration.
Conclusion
The Family Support Group will work closely with treatment center Social Services departments. If possible, each family will receive an assessment/workup of their financial situation and alternatives will be recommended. Medicaid, SSI, Food Stamps, Food banks, Family and Childrens Services are resources that will be used. Families with terminally ill children will be given the utmost consideration and support. Requests from families of children who have survived their illness and are taken off treatment will be given consideration. Any request outside the guidelines will require the full Boards concurrence. Input from medical caregivers will be sought in cases the Board deems necessary. Families who have exceeded their maximum amount may buy back credit for future use by arranging with a board member to work at fundraising activities.
Housing/Utilities
House/rent payments will apply toward the maximum. Electric/utility bills in the amount of $100 per month will apply toward the maximum. Telephone bills, not to exceed $50 per month, will apply toward the maximum. Patients/families are encouraged to use low-rate calling time.

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Family Financial Guidelines

Direct financial assistance
Families of a child under the age of 21 and living at home are eligible for up to $1,000.00 per year in direct financial assistance to be disbursed according to the following: 1 Up to $700.00 is to be disbursed from the Treatment Center Allotment Fund for trips to treatment centers and doctor appointments. Up to $300.00 is to be disbursed from the Emergency Assistance Fund. No more than $200.00 is to be disbursed at any one given time or during any one month period.
Emergency assistance fund

The Emergency Assistance Fund is available to families while their child is on treatment and for up to one year off of treatment. The funds are to be used to pay power bills, water bills, phone bills, and grocery bills and are to be paid directly to the company (FLP, Bell South, etc.).
Treatment center allotment fund

The Treatment Center Allotment Fund is designed to compensate families for the costs of food, lodging, and transportation to and from a treatment center. Families are eligible to receive assistance from the TCA Fund while their child is under the care of a pediatric oncologist and/or a specialist as a direct result of the childs cancer diagnosis and/or treatment up to the childs 21st birthday. The TCA Fund is calculated accordingly: 1 All patients traveling to the Orlando area for clinic (outpatient) visits receive $20.00 per day. All patients traveling to another treatment center outside of Brevard County receive $12.50 per person (limit 2 persons) per day for clinic (out-patient) visits. All patients registered with Childrens Medical Services in Rockledge will receive $5.00 per visit. All patients hospitalized for in-patient services at a treatment center outside of Brevard count receive $12.50 per family member (limit 1 person) per day. This excludes the child with cancer as their basic needs are met by the hospital. All patients requiring an overnight stay in a hotel room or at a Ronald McDonald House or Hope Lodge are eligible for up to $50.00 per night for the portion of the bill that the American Cancer Society does not pay.

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Board of Directors Responsibilities

As a board member of Candlelighters CCFA, I understand that I serve the mission of the Foundation, the current and future members of the Foundation, and the current and future goals of the Foundation. My duties and responsibilities include the following: 1. I and the other board members are fiscally responsible for this organization. It is my duty to know our budget and be active in the planning and fund raising to meet it. 2. I and the other board members are legally responsible for this organization. I should know and approve all of our policies and programs. 3. I and the other board members are morally responsible for the health and well being of our organization. I will always conduct myself courteously and professionally as I am a reflection of all Candlelighters CCFA. 4. I will serve to the best of my ability in time, effort, and financial capacity and by my actions encourage the growth and development of Candlelighters CCFA. I will give, what is for me, a substantial donation to Candlelighters CCFAeither annually or on a pledged regular basis. 5. I will actively engage in fundraising for Candlelighters CCFA in whatever way I am best suited. This may include individual solicitation, working on special events, writing funding requests, etc. There is no quota for money raised as I am making a good faith agreement to do the best that I can. 6. I will attend at least 4 CCFA board meetings, 2 parent support meetings, and 2 special events each year, and be available for telephone consultation. I understand my commitment to this board will require a good deal of time, approximately 15 hours a month. I understand that what I do for the Foundation is not for one individual but for the good of all current and future members, and for childhood cancer awareness, education, and research. I trust that my fellow board members will act in good faith and actively participate in the Foundation to the best of their ability. I know that if I fail to act in good faith, I must resign or I may be asked by another board member to resign.
Signed _____________________________________ Date ___________________________ (Morally, but not legally binding)

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Fundraising Letter, Candlelighters of Brevard, Inc.

Attention all Car Dealers, CANCER! What a devastating word to hear. Whats worse, is hearing that its your child that has cancer. Lives are changed forever, turned upside down and what was once normal, will never be normal again. Thats what our families go through. Families of the Candlelighters of Brevard, Inc. We are dedicated to insuring that these families do not have to endure this crisis alone. Having been incorporated since 1990, we have assisted over 70 families that have had to face this tragedy. We are here to offer emotional support as well as financial assistance, picking up where other agencies and insurance leave off. We are very pleased to announce our Fourth Annual Dealership Challenge. A fundraiser in which we ask for your support. Last years event raised $2,050.00 with only 7 dealerships participating. The Challenge date has been set this year for Saturday, August 31, 1996. One day is all were asking for. One day to set aside a portion of proceeds from cars sold. One day to make a difference in the life of a child with cancer. Mr. Bob Smith of Central Auto has been our event sponsor for the last three years and is ready to go again. We hope you are too! I would like to call you personally to verify your participation. Or you may call me at your convenience. Mr. Smith is also available to answer your questions. He can be reached at 555-1000. Our office number is 555-2000. Thank you for your time, I hope to be speaking with you soon. Sincerely, CANDLELIGHTERS OF BREVARD, INC.

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Donation Thank You Letter
Group Stationery (if available)
(Date) (Donor name) (Title) (Company) (Address) Dear (Donor Name), On behalf of (CCCF Group name), I want to thank you for your generous donation of (Amount). This year in the US, over 12,000 children will be diagnosed with cancer and 1 in 900 young adults between the ages of 15 and 45 will be a survivor of childhood cancer. As you know, our mission is to educate, support, serve and advocate for children with cancer, their families, survivors of childhood cancer and the professionals who care for them. Through your 1support you are helping us meet these critical goals. The Internal Revenue Service has determined that (CCCF Group name) is a non-profit, tax-exempt 501(c)(3) organization. I certify that no goods, services or memberships were received in exchange for your contribution. As a result, your donation is 100% tax deductible to the extent provided by law. Again, thank you for choosing to support (CCCF Group name) and the littlest victims of cancer.
Best regards, (Staff or representative) (Position) (CCCF Group name)

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Happy Mothers Day

From Candlelighters of Brevard, Inc.
You are cordially invited to join us with our imaginary Mothers Day Tea Party. As you enjoy the day with your family and friends, please take a minute to fix yourself a cup of tea and help us remember the children with cancerthose on treatment, those cured, and those we have lost. Your gift will keep the many programs alive that the families of children with cancer have come to depend on. Thank you and Happy Mothers Day!
Thank you for making a difference for kids with cancer.

Name _____________________________________ Address ____________________________________ City________________ State ____ Zip __________ Phone _____________________________________ Amount Enclosed $___________ Host/Hostess ________________________________ Checks should be made payable to:
Candlelighters of Brevard, Inc.

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Cash Contribution ApplicationJones Computers

Name of organization: Candlelighters Childhood Cancer Family Alliance Date: August 18, 1998 Address: 705 Balmoral Court, Friendswood, TX 77546 Telephone: (713) 996-1174 Contact Name and Title: Mary Helmreich, President United Way Agency? No
Brief history of organization (including date founded) Candlelighters Childhood Cancer Family Alliance (CCFA) was started by a small group of parents whose children were diagnosed with cancer or whose children had died due to cancer. The non-profit organization was incorporated in April 1992 so it could provide financial support for everyday living expenses and/or new living expenses incurred directly related to the diagnosis of childhood cancer and its treatment. Candlelighters parent support has had a history of over ten years in Houston. Objective/purpose/primary activities The Candlelighters CCFA mission is twofold: we are committed to promoting childhood cancer awareness, research, and education and to providing emotional, educational, and practical support to children with cancer and their families. Our purpose is to offer more to families with childhood cancer than just peer support. One priority is to provide practical help in regards to everyday living expenses such as grocery gift certificates, clothing, meal passes, and parking validations at treatment centers, tuition, and the like. Another priority is practical support for funeral related expenses. Our primary activities includes providing: Parent Consultants who provide one-on-one emotional and educational support directly to each family and who render practical services for food, clothing, parking, and the like. Also provided are: support group meetings, bimonthly newsletter, bereaved parent support, workshops, conferences, and special events like our Childhood Cancer Awareness Childrens Party and Adopt-A-Family for the Holidays. Geographical area and number of people served Our mail list includes approximately 1400 childhood cancer families who are treated at the Texas Medical Center or who reside in 13 counties of the greater Houston area: Harris, Fort Bend, Liberty, Chambers, Jefferson, Galveston, Brazoria, Wharton, Colorado, Austin, Walkler, Montgomery, and San Jacinto. We are available to serve all childhood cancer patients treated at the Texas Medical Center of more than 2000 patients every year. Principal sources of income Donations from General Public 25% Donations from Board and Individuals 27% Donations from Grants 20% Donations from Corporations 28% Do you charge a fee for your services? No. Amount of request $3,300 for parking 1,500 for meal passes or grocery gift certificates $4,800 Total How will donation be used? To fund three months of Parking and Meal passes and/or grocery gift certificates for childhood cancer families. Why do you believe your program is beneficial to our community? Childhood cancer families of all economic backgrounds have come to depend on assistance from us for parking and meals. These services are not being supplemented by other outside community resources nor are the treatment centers able to provide these important services at no cost to families. Childhood cancer is the leading disease killer of children. It is devastating emotionally to every member of the family. It is also devastating to the family budget. Private insurance, PPOs or Medicaid does not cover all hospital, clinic, physician, and lab expenses, nor does it cover the additional expenses of parking, outside meals, childcare and meals for siblings, and transportation for siblings. A necessary outcome for many families is for one parent taking partial or permanent leave of absence from work due to the diagnosed childs treatment schedule of 9 months to 3 years, the average being 2 _ years of treatment. Children who relapse have been known to be on treatment for 5-7 years, or more. Why do you believe Jones Computers should be a participant? Jones Computers is perceived as a successful, dynamic company and composed of young professionals and executives. Candlelighters looks to community sponsors like Jones Computers who understand our mission and who would like to help us make a difference for families afflicted with childhood cancer. Candlelighters focuses on the emotional, educational, and practical needs of children with cancer and their family members. We are a parent volunteer organization with extremely low administrative costs of approximately 14% or less at any given time. Everything we do is geared to support the child with cancer, their siblings and parents, the childhood cancer survivor, and bereaved families. Are benefits offered to Jones Computers in exchange for a contribution to your organization? No. Only children with cancer and their family members, bereaved families, the childhood cancer survivor, and the adult survivor of childhood cancer are eligible for benefits. Candlelighters CCFA does acknowledge donors in our bimonthly newsletter and on our Internet home page.
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Appendix D: Reproducible Forms

Information Sheet Subscription Form for the National Candlelighters Quarterly Newsletter (See page 26 for accompanying text.) Needs Assessment Questionnaire Form (See page 46 for accompanying text.) Chart for Evaluating a Meeting (See page 52 for accompanying text.) Group Meeting Questionnaire Form (See page 55 for accompanying text.) Group Meeting Site Checklist Form (See page 56 for accompanying text.) Group meeting Site Checklist Form (See page 79 for accompanying text.) Strategies Worksheet (See page 80 for accompanying text.) Group Volunteer Form (See page 95 for accompanying text.)
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Information Sheet
Parents can use for taking notes about a childs treatment in a meeting with medical staff.
NOTES
Date: ____________________________ Doctor(s) Seen: _______________________________________________________________________________
Questions: ___________________________________________________________________________________
___________________________________________________________________________________________ ___________________________________________________________________________________________ ___________________________________________________________________________________________ ___________________________________________________________________________________________
Medications and Treatments: _____________________________________________________________________

___________________________________________________________________________________________ ___________________________________________________________________________________________ ___________________________________________________________________________________________ ___________________________________________________________________________________________
Instructions or Medications Changes: __________________________________________________________

___________________________________________________________________________________________ ___________________________________________________________________________________________ ___________________________________________________________________________________________ ___________________________________________________________________________________________
Next Appointment: __________________

Subscription Form for the National Candlelighters Quarterly Newsletter

National Candlelighters Quarterly Newsletter Subscriptions
There is no charge for the Candlelighters Childhood Cancer Foundation Quarterly Newsletter or the Youth Newsletter. Both are sent bulk mail and will not be forwarded if you move. Everyone receiving the newsletters is kept on the mailing list for three years, and needs to renew their subscription at that time. When notifying us of a change of address, please include your mailing label. Send changes/additions to Candlelighters Childhood Cancer Foundation, 3910 Warner Street, Kensington, MD, 20895. Send me the Quarterly Newsletter Remove me from the mailing list Send me the Youth Newsletter Correct my address
I am:
CL Child Life Worker CY Clergy DR Physician or Psychologist ED Educator GR Parent Group Leader LI Librarian child adult NU Nurse PR Press PT Parent of a child with cancer SB Sibling: child adult SW Social Worker TN Patient: child teen UM Member Umbrella Coalition OTHER (please indicate) ______________________ LT Long-term Survivor:
Name (and title, if any) ________________________________________________ Institution (if any)____________________________________________________ Address ___________________________________________________________ City/State/Zip Code ___________________________________________________ Phone ____________________________________________________________ Fax ______________________________________________________________ E-mail ____________________________________________________________
Yes! I would like to help children with cancer and those who care for them by making a tax deductible gift of: $25 $50 $100 $500 $1,000 Other $_____
The Candlelighters Childhood Cancer Foundation is a national 501 (c) (3) non-profit membership organization whose mission is to educate, support, serve and advocate for families of children with cancer, survivors and of childhood cancer and the professionals who care for them.
Thank you for supporting Candlelighters Childhood Cancer Foundation!

Needs Assessment Questionnaire Form

Directions:
Read each item carefully Put an X in the Yes box if you would like help with that item
Needs EMOTIONAL NEEDS I am interested in . . . 1. Tips for dealing with stress 2. Time to talk with other parents of children with cancer 3. Ways my family can support each other during hard times 4. Learning how to make time for myself INFORMATIONAL NEEDS I would like more information about . . . 1. My childs medical condition 2. My childs special needs 3. Therapies and services my child is getting now 4. Other therapies that might help my child 5. Possible late effects of my childs treatment 6. My childs educational needs and other schooling issues 7. My childs nutritional needs and nutritional supplements 8. How to play and talk with my child at this time 9. How to discipline my child at this time 10. How to talk about my child with doctors and nurses/How to ask them for the help we need 11. Other programs and services that are available for my family 12. Accessing a library of resources 13. Maps/directions for clinics, doctor visits, the hospital, etc. Y N Comments or Suggestions
Put an X in the No box if you feel you already have what you need You can state your specific suggestions in the Comments box
Needs Comments or Suggestions
Y N
PRACTICAL NEEDS I am interested in more information about . . . Y N 1. Services and resources at the hospital 2. Ways to share the responsibility of caring for my child with my partner 3. Working with our insurance company 4. Paying my bills 5. Getting time off from work 6. Getting legal advice SOCIAL NEEDS I would like more help with . . . 1. Dealing with marital stress 2. Understanding my other childrens reactions and needs 3. Talking about my childs cancer with my parents, friends, and other relatives 4. Meeting new people 5. Ways for my family to enjoy time togethersocial and recreational events 6. Finding a local oncology camp SPIRITUAL NEEDS I am also interested in . . . 1. Learning what my childs cancer will mean to our family 2. Talking about how I now feel about G-d 3. Learning how people deal with the future OUTREACH NEEDS I am also interested in . . . 1. Educating the general public about childhood cancer 2. Making changes in the medical system
Y N
Y N
Y N
Chart for Evaluating a Meeting

Parts of the Meeting Positive Features (things that people felt good about) Negative Features (things that could have been done better) Things to Change (Specific suggestions for improvement)
Agenda:
Participation:
Leaders role:
Tasks accomplished:
Peoples feelings:
Other: ___________

Group Meeting Questionnaire Form

Name: _________________________________________ Date:________________________________________ Address: ___________________________________________________________________________________ Phone:_________________________________________ E-Mail: ______________________________________
1. When would be the best time for you to attend group meetings?
Time/Day Morning Afternoon Evening
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
2. Where would be the best place for you to attend support group meetings? Please check one: Hospital/Treatment Center Private Home Community Center Other (please specify)__________________________
3. How far are you able to travel to attend meetings? _______ miles 4. Prefer to meet for: 1 hour 2 hours 3 hours 5. Would it be helpful to you if there was babysitting provided during the meetings? Yes No 6. Would it be helpful to you to join a car pool to get to and from meetings? Yes No

Group Meeting Site Checklist Form

Possible Maximum Meeting Site Capacity Cost Dates Available Parking Restrooms Restrictions Services Available Accessible by bus? Additional Notes
1.
2.
3.
4.
1.) How many people will the space accommodate? _______ 2.) Charges: No Yes Amount $_________ 3.) Dates when space is available? ___________________ 4.) Is there parking on the premises or nearby? Yes No How much does it cost? $_____________ 5.) Are the restrooms on the same floor as the meeting room? Yes No
6.) Are there any restrictions (e.g. no smoking, noise levels, etc.)? Yes No 7.) Does the facility provide coffee, slide projector, blackboard, etc? Yes No 8.) Will public transportation be easily accessible? Yes No

Group Evaluation Form

Thank you for taking the time to complete this form. We need your feedback to help us improve what we arent doing well and to continue the things that work.
INSTRUCTIONS:
Please rate each of the items in the table. A rating of ONE indicates that you STRONGLY DISAGREE with the statement. A rating of FIVE means that you STRONGLY AGREE with the statement. If you have specific comments or suggestions about a particular item, please write them in the comments column. Item I think the overall effectiveness of our group is excellent. I feel as though the group meets my emotional needs. The group provides me with the information I need about my childs cancer. I enjoy the groups social events. I think that there should be more social events. I feel satisfied with the role that professionals play in our group. I think the group should be involved in efforts to change aspects of the health care system. I have enjoyed and benefited from the guest speakers. I think we should have more guest speakers. I feel as though I can speak openly and freely during group discussions and that people are interested in listening to me. I feel as though everyone in the group has the opportunity to speak. I think that our groups discussions are productive and feel that I benefit from them. I like the way the facilitator leads our discussions. I think our leader(s) is (are) doing a good job. I think that our leader(s) is (are) committed to the group. I feel comfortable with the way our group makes its decisions. I am very happy that I joined this group. Strongly...Strongly Disagree.....Agree 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 Comments
The best things about our group are: ________________________________________________________________ _________________________________________________________________________________________ The things about our group that I would like to change are: ________________________________________________ _________________________________________________________________________________________

3910 Warner Street, Kensignton, MD 20895, 1-800-366-CCCF, (301) 962-3520, (301) 962-3521 fax E-mail: info@candlelighters.org Website: http://www.candlelighters.org
Strategies Worksheet
Action Who is Responsible Who will Assist Phone # Phone # Materials Needed Cost Completion Date Evaluation Plans

3910 Warner Street, Kensignton, MD 20895, 1-800-366-CCCF, (301) 962-3520, (301) 962-3521 fax E-mail: info@candlelighters.org Website: http://www.candlelighters.org
Group Volunteer Form

Name: _________________________________________ Date:________________________________________ Address: ___________________________________________________________________________________ City/State/Zip: ________________________________________________________________________________ Telephone: Day __________________________________ Evening ______________________________________ E-Mail: ________________________________________ Fax: ________________________________________
1. Where do you work? What do you do? ____________________________________________________________ 2. What community groups, clubs, service organizations are you involved in? ____________________________________ 3. What are your hobbies/interests?_________________________________________________________________ Other skills and ideas that I have to offer to the group:____________________________________________________
PLEASE CHECK THE ACTIVITIES THAT INTEREST YOU: Fundraising Volunteer Opportunities:
I will help raise money to carry out the groups goals I will help plan special events I will contribute food for special events I will do cleanup for special events I will help with special events group mailings
Office/Group Volunteer Opportunities:

I will volunteer my time in the office to help with: database mailings resource library I will line up speakers for educational meetings I will help create and compile parent questionnaires about special interests (e.g., nutrition, education) I will help with the parent information center (waiting room bulletin board) I am interested in working on: public relations legal issues office assistance accounting hospital liaison newsletter filing picking up donated items
Transportation/Housing Volunteer Opportunities:

I am willing to help with transportation for the childrens group I would be willing to provide support to families here from out of town for treatment: provide temporary housing take on tours of the city take grocery shopping pick up or take to airport, train, or bus station babysitting for brothers and sisters of hospitalized children
I am willing to provide refreshments for the childrens group


3910 Warner Street, Kensington, MD, 20895 Phone: 1-800-366-CCCF, (301) 962-3520 Fax: (301) 962-3521 E-mail: info@candlelighters.org Website: http://www.candlelighters.org

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You Are Not Alone

A Sourcebook for Support Groups for Families of Children with Cancer

Authors Mark Chesler, Ph.D. and Sara Eldridge, M.S.W., M.P.H.

Executive Director, Director of Publications Ruth Hoffman

Design Layout MLK Designs

Photography Off Broadway Photography

Candlelighters Childhood Cancer Foundation

Printed on recycled paper in the United States.

When you stand in the middle of sadness and sorrow,

This Sourcebook is dedicated to

Candlelighters Childhood Cancer Foundation

PART III. GETTING THE GROUP STARTED

PART IV. STRUCTURING THE GROUP

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Candlelighters Childhood Cancer Foundation

PART VI. WORKING WITH OTHER ORGANIZATIONS

PART VII. RESOURCES AND REFERENCES

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Candlelighters Childhood Cancer Foundation

Candlelighters Childhood Cancer Foundation

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Candlelighters Childhood Cancer Foundation

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Candlelighters Childhood Cancer Foundation

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Chapter 1: Introduction to Childhood Cancer and This Sourcebook

Where does this information come from?

How can you best use this sourcebook?

What makes mutual support groups such a valuable resource?

What challenges do families of children with cancer face?

What steps are involved in starting a new group?

What should we do?

How should we organize ourselves?

Who else do groups work with?

What skills do we need?

Candlelighters Childhood Cancer Foundation

Chapter 2: The Stresses of Childhood Cancer

Box 1. Categories of Stress

The initial shock

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Candlelighters Childhood Cancer Foundation

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Candlelighters Childhood Cancer Foundation

Chapter 3: Mutual Support Groups for Parents of Children with Cancer

What is a mutual support group?

What is mutual support?

What do mutual support groups do?

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Why do mutual support groups work? What are the payoffs?

Mutual Support Group Activities

Talk about religious beliefs Share the struggle

Source: Chesler and Barbarin, 1987, p. 214.

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What is needed for an effective mutual support group?

Candlelighters Childhood Cancer Foundation

Chapter 4: The National Candlelighters Childhood Cancer Foundation

Box 3. Schedule for a Group Leaders Workshop

What does the national CCCF offer local groups?

11:00-11:30 a.m. 11:30-12:30 p.m. 12:30-1:30 p.m.

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What does the national CCCF provide for individual families?

What do local groups provide to the national CCCF?

The International Confederation of Childhood Cancer Parent Organizations (ICCCPO)

UM Member Umbrella Coalition OTHER (please indicate)_ ___________________