Child & Youth Mental Health Day Research Forum

Making Mental Health Research Work for Children, Youth and Families
Child & youth Mental health day ReseaRCh FoRuM

May 7th 2010
JANA DAVIDSON MD, FRCP (C) KELI ANDERSON STANLEY KUTCHER MD, FRCPC CAROLYN OLIVER MSW
setting a new CouRse

this RepoRt is dediCated to the MeMoRy oF JaCkie FaRquhaR in honouR oF heR passion and dediCation to Child & youth Mental health. JaCkie was a tiReless advoCate FoR Child & youth Mental health and woRked FoR the vanCouveR sChool BoaRd.
Funding for May 7th event, report and printing provided by:
Child & Youth Mental Health Day Research Forum
introduction
Mental health is increasingly recognized as a critical component of population health. Diagnosable psychiatric disorders affect about 15% of Canadian children and youth (1Waddell and Shepherd, 2002). This amounts to 2 million children or youth, or 4-5 students in every classroom of thirty students across the country. About 70% of adults living with mental health challenges developed diagnosable symptoms during childhood or adolescence (2NCYMHD, 2010). There is no bigger health issue affecting children and youth in Canada today, yet limited awareness of the problem, inadequate mental health services, and a lack of research providing insights and solutions continue to be significant challenges. Given the magnitude of this problem and the low level of funding currently available to address it, it is clear that nationally, more funding is needed for child and youth mental health care and research. Overall, health research funding in Canada falls far short of investment in comparable countries, and the proportion of this funding that goes to child and youth mental health significantly under-represents the prevalence and impact of mental illness in this country. More investment is needed in research at the front-end to ensure care is evidence-based and effective/cost-effective in addressing needs. Research can also contribute to improving the mental health of populations when it addresses questions such as What makes people mentally healthy? What keeps people mentally healthy? and What is the most cost effective way to operationalise the answers to the first two questions? The experiences and needs of end users (children, youth and families living with mental health disorders) present, when included, a significant opportunity to increase the relevance of mental health research. Children and youth with mental disorders and their families know from experience some of the questions that need to be answered by research and the services that require improvement. They understand where creative and effective solutions may be most needed. Research established in partnership with children, youth and families rather than solely driven by researchers may provide a more immediate opportunity to make a real and significant difference to the lives of those with lived experience. Yet despite the importance of the knowledge held by these key stakeholders, few systematic opportunities have been made available to date for young people and their families to collaborate with researchers as active partners in the development of research priorities and the application of research initiatives. The role of children, youth and families has been largely limited to that of research participants and recipients of findings. Unfortunately, the fragmentation of user groups has contributed to an absence of a national voice to inform a relevant research agenda and to identify the gaps in knowledge mobilization and service delivery. Changes to the current relationship between researchers and children/youth/parents may offer an opportunity to advance the research agenda in a manner that can meet multiple needs simultaneously.
Waddell, C. & Shepherd, C, (2002). Prevalence of mental disorders in children and youth: A research update. Mental Health Evaluation and Community Consultation Unit, Department of Psychiatry, Faculty of Medicine, The University of British Columbia Retrieved from http://ncymhd.com
Relationships that work - Creating a National Voice

In 2000 the F.O.R.C.E. Society for Kids Mental Health was established in British Columbia by two moms, one who lost a son to suicide, and another who was determined not to allow the same fate for her son. For 10 years the F.O.R.C.E. has provided peer support, system navigation and advocacy for parents, families and caregivers who have children and youth with mental health challenges. The F.O.R.C.E. lobbied for British Columbia to become the first province in Canada to establish, fund and implement a child and youth mental health plan and to declare May 7th as Child and Youth Mental Health Day. The F.O.R.C.E. is leading the National Working Group to establish National Child and Youth Mental Health Day. In 2008, a chance meeting between one of the F.O.R.C.E. moms and the deputy editor of Todays Parent, in a New York coffee shop, led to the development of a new and exciting partnership. Todays Parent, founded in 1984, is Canadas leading parent magazine, The F.O.R.C.E.. Todays Parent magazine and the Mental Health Commission of Canadas Child & Youth Mental Health Framework Project, the Evergreen, combined efforts to commission a national parent survey on child and youth mental health. The 2009 survey produced compelling and informative results. Among the 4500 respondents, one quarter were unaware of mental health treatment options to address the needs of young people with mental disorders and half were unaware of the existence of family and peer support services for children and youth with mental illness. Parents indicated a need for improved access to services, better coordination across services and an increased role for the education system in the provision of mental health care. Importantly, more than half of the parents surveyed indicated that child and youth mental health is an issue they think about occasionally or often. (3Anderson, Kutcher & Connell, 2010). While the Todays Parent survey was being developed, Keli Anderson, Founder and Executive Director of The F.O.R.C.E. and Dr. Stan Kutcher, the Sun Life Financial Chair in Adolescent Mental Health and Director of the World Health Organization Collaborating Centre in Mental Health at Dalhousie University identified a shared concern regarding the absence of dialogue between youth, families, and researchers related to child and youth mental health research. They agreed that a more collaborative process was necessary and together with representation from BC Mental Health and Addiction Services coordinated the Child and Youth Mental Health Day Research Forum held on May 7, 2010 in Vancouver, BC. The Forum brought together mental health researchers, service providers, and youth and families with lived experience. The Forum was designed to facilitate dialogue and build relationships among key stakeholders with the ultimate goal of influencing mental health research in Canada so that it better meets the needs of children, youth and families.
Anderson, K., Kutcher, S. & Connell, C. (2010). Before and after conceptionengaging parents of today and parents of tomorrow. Journal of the Canadian Academy of Child and Adolescent Psychiatry, 19, 3, pp197-200
Child & youth Mental health day ReseaRCh FoRuM

The May 7th, 2010 Forum was hosted by The F.O.R.C.E. Society for Kids Mental Health at the University of British Columbia Longhouse and was attended by 68 youth, family members, researchers, service providers and policy makers. Goals of the Forum included: 1) Establishing collaboration and facilitate dialogue between youth, families, researchers and service providers 2) Identifying meaningful user-defined research directions that could be used to inform policy development, and priority setting by research and funding bodies 3) Developing strategies that engage children, youth and families as research partners. 4) Promoting local, regional, provincial and national awareness of Child & Youth Mental Health Day. 5) Launching the National Institute of Families as a method to develop and sustain collaborative action Attendees reflected the diverse nature of stakeholders in child and youth mental health, including nearly equal representation from youth, parents, researchers and service providers from across Canada. Youth representation included students with lived experience of mental illness and leadership experience in peer support and advocacy from Simon Fraser University and Dalhousie University and from the Youth Advisory Committee for the Mental Health Commission of Canada. Family participants included parents, grandparents and caregivers from 4 of the 5 regions of the province of British Columbia.
Professional attendees represented a range of child and youth mental health practitioners, including research, advocacy, training, and policy and health service innovation. Speakers included Dr. Stan Kutcher and Dr. Jana Davidson (Medical Director and Head of Child & Adolescent Psychiatry, UBC & Childrens & Womens Health Centre of BC). Representatives of government included Mary Polak, Honourable Minister for Children and Family Development, British Columbia and Sandy Wiens, Director of Child and Youth Mental Health Policy British Columbia. Together, Mary Polak and Sandy Wiens presented the provincial governments (British Columbia) commitment to explore new approaches to collaboration, shifting from a problem-based model of mental health care to a positive, resiliency based model featuring the active participation of youth and families. Caroline Connell, Todays Parent Editor-in-Chief discussed the role of the magazine in supporting the mental health of Canadian children, youth and families.
It was really great to see the input of youth sought and listened to in terms of research
youth participant
Of the invited researchers, over 20 from across Canada who were unable to attend in person provided written submissions on their identified research priorities within child and youth mental health. This information was shared with attendees and helped inform the days discussions. The 2010 Child and Youth Mental Health Day Research Forum constituted the first ever engagement event of its kind in Canada. The Forum generated rich discussion, innovative dialogue on partnerships, and a commitment to future collaboration. The emergent theme of the day was the critical importance of including the voices of children, youth and families with lived experience of mental illness in determining research priorities, directions, and funding. Researchers in attendance were excited about the prospects of advancing child, youth and family mental health research through ongoing collaborative dialogue with those who their research is intended to benefit.
the Results
a) establishing Meaningful priorities, goals and outcomes
The days dialogue produced a wealth of new ideas about possible mutually created research goals and meaningful research outcomes. The opportunity for face-to-face knowledge exchange contributed significantly to the development of collaborative, practical, Family Smart research themes. Additional perspectives from researchers who were not able to be present were reviewed and discussed by attendees.
This is one of the first times I was asked what was meaningful to me as a parent
The following themes were generated for consideration in setting priorities and goals for child and youth mental health research: 1) Society is free from the stigma of mental illness 2) The entire population is properly knowledgeable about mental health and mental illness 3) Mental health is understood to be a lifespan issue and a whole family issue 4) Mental health and physical health are understood as equally important and complementary elements in a holistic system of medical care 5) Mental health care is based on need, related to diagnosis and impact on functioning 6) Integrated systems of care are designed to meet the needs of, and are determined in partnership with children, youth and families 7) Mental health policies incorporate effective strategies for mental health promotion and the prevention of mental health disorders 8) Pathways to effective, appropriate care are transparent, available, accessible and understood by all 9) Individual and family needs are respected and met at the point of care 10) Mental health policies and programs are evidence-based, evidence-driven and meaningful to children, youth and families 11) Treatments are effective, and risks are well understood and mitigated
12) There is an improved understanding of the causes of mental health and mental illness, particularly in the field of neuroscience including the development of the brain and the complex genetic and environmental influences across the life span. 13) The knowledge exchange needs of children, youth and their families are understood, respected and responded to in the provision of care 14) The most effective means of providing best available evidence in a format that appreciates the needs of all knowledge users is known and applied.
B) establishing Research priorities

Much can be learned from the research themes identified by Forum participants. One key priority identified by the group focused on the importance of increased research on the reduction and elimination of stigma. Another key priority identified by participants was strategies for creating meaningful partnerships with children, youth and families. The critical importance of peer and early interventions, with an emphasis on research projects associated with the integration of schools into the system of mental health care was featured, along with research supporting family resilience and efforts to learn directly from affected children, youth, parents and caregivers. Forum participants also generated specific, concrete questions for researchers to consider in their work.
The May 7th event allowed me to have the right conversation, but with a new lens, thanks to the parents and youth present
Researcher
By far the greatest research need identified by Forum participants was related to the identification and application of most effective interventions for changing social attitudes, mobilizing knowledge and transforming the mental health system to one based on child, youth and family focused, evidence based care. A key theme of the day was the need to develop effective knowledge mobilisation strategies to eliminate stigma and educate mental healthcare practitioners about the lived experience of children, youth and families with mental health challenges While research into the causes and treatment of mental illness was identified as important, it was considered secondary to the facilitation of new attitudes and enhanced models of care, ensuring that what was available was universally based on the best evidence already available. When provided an opportunity for direct dialogue, youth, families and researchers generated research priorities that reflected the social impact of mental illness and the need for ongoing knowledge exchange initiatives.
Research domains identified by Forum participants

Based on a summary of deliberations at the Forum, the following eleven key research questions and related ideas for mental health research are summarized below. 1) How do we eliminate the stigma of mental illness?
Messages and communication strategies to change public perception of mental health Measuring change in social attitudes towards mental health The potential for new media and technology to communicate de-stigmatising information Reducing the impact of stigma on children, youth, siblings, parents and caregivers
2) How do we maximise the participation of children, youth and family in all aspects of the mental health system, from service design to delivery and evaluation?

Strategies to create partnerships with parents, caregivers The effect of family engagement on outcomes Youth engagement and empowerment strategies Child engagement and empowerment strategies The best models that can be applied to assist families in accessing necessary services for their child or youth and other members of their family
3) What works?
Effectiveness or lack of effectiveness of non-pharmacological approaches (e.g. alternative therapies and medicinal marijuana) Lifestyle factors such as nutrition, recreation, sleep on measurable outcomes in mental health promotion, prevention and treatment Evaluation of peer interventions Best practices and long term outcomes of early intervention strategies Strategies to build resiliency of demonstrated effectiveness and the prevention of second generation mental illness Effectiveness of different service delivery mechanisms (e.g. home-based and school-based care, care team meetings, E.R. intervention) on treatment outcomes Key mechanisms in, and optimal age for, successful interventions
Increasing the number of appropriately demonstrated effective interventions in key domains of need, for example in children with anxiety disorders, cognitive impairment and concurrent substance abuse The impact on children and youth of new medications and medications approved for adults Increased effectiveness research, such as evaluating the effectiveness of evidencebased treatments like Dialectical Behavioural Therapy when implemented under real world conditions
4) What is the best way to engage the education system in addressing child and youth mental health?
What is the best way of improving the current level of mental health literacy in schools? How to best address systemic barriers to supporting children with mental health problems in school Systematic and critical evaluation of the effectiveness, cost-effectiveness and safety of school-based mental health promotion and prevention programs The outcomes of mental health education for teachers Effective strategies to support children with mental health problems to succeed in school Effective strategies to bridge homes and schools
5) How do we build a model of care that meets child, youth and family needs over the lifespan?

Gaps in current services provision and policy Systemic barriers to service (e.g. age defined services and programs) Strategies for implementing fundamental system change The optimal model of whole family centered practices that strengthens all members in families The creation of child, youth and family-friendly service environments The impact of focusing on wellness rather than illness Comparing care pathways for chronic mental and physical health conditions Housing needs of mentally ill youth
Evaluation and outcomes from providing respite to parents and caregivers Models that support youth transitioning into adult services
6) How do we improve the core competencies & mental health knowledge of those who support our children and youth?

Implementation of evidence based practice Training for health care and child and youth care workers Enhancing mental health competencies in usual health care settings Parent and community education The intersection of mental health promotion and drug and alcohol awareness Education to promote resiliency of demonstrated impact of mental health outcomes
7) How can we recognise and diagnose mental illness earlier?

Early indicators of mental health challenges in infants, children and parents Describing childhood manifestations of symptoms (e.g. the difference between imagination and delusion in a child, how symptoms differ for children with cognitive impairments) Improving diagnostic tests and interdisciplinary screening and assessment tools The contribution of brain imaging, biological markers, and genetic and family history to diagnosis Best evidence based practices in assessment Indicators of mental wellbeing
8) How do we achieve effective interprofessional collaboration?

Effective multi-disciplinary service models Current barriers to multi-disciplinary collaboration Training models to create cross-sector understanding of mental illness and wellness Outcomes of interprofessional collaborative care
9) What are the causes of mental illness?
Risk factors for mental illness and the probability of second generation mental illness
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The intersection of mental illness and drug and alcohol use Societal and family contributors to mental illness Epigenetic research The long term impact of mental disorders and treatments on developing brains
10) What do families need?

Understanding on the impact of mental illness on all family members Information and support to meet the needs of broader family Best practice tools and strategies for parenting a child or youth with mental health challenges Support to prevent caregiver burnout Support for families to navigate the system Resilience and relationship promotion
11) What is it like to live with mental illness?

Child and youth perceptions of what has helped and hindered their mental health Parent/Caregiver perceptions of what has helped and hindered their role of parenting a child or youth with mental health challenges Lessons to be learned from resilient children with mental health problems Phenomenology of disorders, interventions and outcomes Parent/Caregivers perception of risk associated with help seeking for their own mental health challenges
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C) ongoing partnership: the national institute of Families for Child and youth Mental health
The Child and Youth Mental Health Day Research Forum held on May 7th, 2010 demonstrated the richness of dialogue generated by bringing together youth, families, caregivers, researchers, health care providers and policy makers. While the research domains described above are not complete nor set in stone, they do provide a first step in the journey of collaborative research directions that can be further developed between researchers and youth/parents. Next steps will include sharing these results with key stakeholders and building a sustainable forum for meaningful, ongoing discussion and which includes the perspectives of children, youth and families in the development of research priorities. Emphasis will be placed on the work of researchers and funding agencies that support research initiatives in child and youth mental health. The Institute of Families for Child & Youth Mental Health, launched at the Forum, will provide a coordinating role for this process. This will include but not be limited to the coordination of partnerships between youth and families with lived experience of mental illness and researchers, policy makers, health providers and educators across Canada. The Institute will undertake to play a facilitator role for the meaningful and formal engagement of families in the improvement of mental health care systems across Canada. Chaired by Dr. Jana Davidson and Ms. Keli Anderson, the Institute planning committee includes representatives from the Child Welfare League of Canada, Mental Health Commission of Canada, National Infant Child and Youth Mental Health Consortium, Canadian Association of Paediatric Health Centres, Canadian Paediatric Society, Parents for Childrens Mental Health, Students for Mental Wellness, Youth Net, Todays Parent and other leading champions in child and youth mental health. The Institute will develop and sustain the partnerships established both prior to and during the Child and Youth Mental Health Day Research Forum. The Institute of Families will facilitate the national dissemination of the results of this Forum and work to further engage researchers with children, youth and families in order to create the richness that this union can bring. The Institute will maintain a database of youth and families members wishing to participate in research and will work collaboratively with key partners to develop research projects based on the priorities identified by the Forum and further refined in discussions with the research community. The Institute has secured the Family Smart trademark to to identify research, programs, policies, practices and services that are Family Smart based on criteria determined by children, youth and families. The Institute will establish a Parent Leadership University and a library hub to support knowledge exchange
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including the dissemination of information about leading practice, evidence-informed and Family Smart programs across the continuum of child and youth mental health. It will partner with other groups and organizations that provide best evidence information that is useful for end-users and providers alike. The Institute will also assume a leadership role in providing guidance and consultation about best methods of engaging families in developing research priorities, goals and outcomes that are meaningful to them, and to increase the inclusion of family perspectives in research, policies, practices and service planning.
summary
On May 7th 2010, youth, families, researchers, service providers and policy makers came together to initiate discussion on a new strategy for mental health research. Closing the gap between users, researchers, funders, service providers and policy makers increases the chances of producing research that may more immediately benefit children, youth and families. The Forum produced an initial set of research domains that can inform future dialogue between researchers, research agencies/ funders and children/youth/families. The work of the Forum constituted an unprecedented step towards bringing children, youth and their families into mental health research as equal partners in a national context. The Forum also provided an opportunity to launch a national organization that will pursue the vision of partnership amongst key stakeholders to support child and youth mental health across Canada. The next step will be to share the outcome of this consultation with family members, funding agencies, governments, agencies and other stakeholders across Canada.
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appendix: a
Contributions made by the following attendees at the event on May 7, 2010:

(youth, parents, caregivers, researchers, business, government) Keli Anderson Russell Ball Gail Bagri ReneeBoisvert Emily Borgelt Dr. Grant Charles Dr. Nicole Chovil Ken Chow Kim Cobb Julie Collette Dr. Connie Coniglio Caroline Connell Dr. Jana Davidson Jennifer Ann de la Torre Sheena Dhaliwal Bree Edgar Jackie Farquhar Nicole Fast Bev Gutray Alethea Hackman Sarah Hamid-Balma Brian Hansen Lisa Hansen Maggie Joseph Dr. Anne Junker Taylor Kagel Emma Kendall Dr. Sarosh Khalid-Khan Monica Kriese Dr. Stan Kutcher Pam Lansky Dr. Bonnie Leadbeater Dr. Rob Lees Suzanne Lewis Bronwyn Loucks Dr. Ian Manion Mat Marchand Dr. Darryl Mayberry Betty McConnell Rod McCormack Dr. Kimberley McEwan Denise McKibben Marlisse McRobie Neil Mercer Carl Miller Dr. Marlene Moretti Christer Myberg Dr. Mary Nixon Nancy Pereira Jodie Polack Nancy Reynolds Ross Robinson Joe Roback Gloria Robertson Mary Robertson Jeannie Rohr Elizabeth Saewyc Gillian Schoenhuffs Brent Seal Kathy Short Dee Dee Sung Dr. Yifeng Wei Sandy Wiens
Contributions made by the following researchers who submitted their input prior to the May 7th event:
Margaret Steele Abel Ickowicz Rmi Quirion Alice Charach Margaret D Weiss Harriet MacMillan Daniel Gorman Melanie Barwick Elizabeth Osuch Charles E. Cunningham Patrick.McGrath Penny Corkum Sonia Lupien Leora Pinhas Peter Szatmari Jane Garland Khaled Khan Marie-Jose Fleury
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appendix: B1
15
appendix: B2
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appendix: B3
institute of Families 201 - 601 West Broadway Vancouver BC V5Z 4C2 Canada telephone 604 831 1958 email instituteoffamilies@gmail.com www.instituteoffamilies.com
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Making Mental Health Research Work for Children, Youth and Families