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Evaluation of a Preventive Intervention for Bereaved Children

Grace H. Christ a ; Victoria H. Raveis b ; Karolynn Siegel b ; Daniel Karas b ; Adolph E. Christ c a Columbia University School of Social Work, USA b School of Public Health of Columbia University, New York, NY, USA c Health Science Center in Brooklyn, Emeritus at the State University of New York, NY, USA

To cite this Article Christ, Grace H. , Raveis, Victoria H. , Siegel, Karolynn , Karas, Daniel and Christ, Adolph E.(2005) 'Evaluation of a Preventive Intervention for Bereaved Children', Journal of Social Work in End-Of-Life & Palliative Care, 1: 3, 57 — 81

To link to this Article: DOI: 10.1300/J457v01n03_05

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Evaluation of a Preventive Intervention for Bereaved Children

Grace H. Christ, DSW Victoria H. Raveis, PhD Karolynn Siegel, PhD Daniel Karus, MS Adolph E. Christ, MD

ABSTRACT. One hundred eighty four families completed a twelve month parent-guidance (experimental) or a parent telephone-monitoring (comparison) intervention initiated during one parent’s terminal cancer illness and continued until six months after the death. Children in the parent-guidance intervention reported greater reduction in trait anxiety and greater improvement in their perceptions of the surviving parent’s competence and communication, a primary goal of the intervention. Identified problems in implementing evaluations of experimental inter- ventions with bereaved children include the following: (1) Available and commonly used standardized psychopathology measures do not ad- equately capture changes in non-psychopathological but bereaved dis-

Grace H. Christ, DSW, is on the faculty at the Columbia University School of Social Work. Victoria H. Raveis, PhD, Karolynn Siegel, PhD, and Daniel Karus, MS are on the faculty at the Joseph L. Mailman School of Public Health of Columbia University, New York, NY. Adolph E. Christ, MD, is Professor Emeritus at the State University of New York, Health Science Center in Brooklyn, NY. Address correspondence to: Grace H. Christ, DSW, Columbia School of Social Work, 606 West 116th Avenue, New York, NY 10027. This work was supported in part by grants from the National Institute of Mental Health (RO1-MH41967), the American Cancer Society (PRB-24A), the Van Ameringen Foundation, the Society of Memorial Sloan-Kettering Cancer Center and The Soros Foundation’s Project on Death in America.

Journal of Social Work in End-of-Life & Palliative Care, Vol. 1(3) 2005 Available online at http://www.haworthpress.com/web/JSWEL 2005 by The Haworth Press, Inc. All rights reserved.

doi:10.1300/J457v01n03_05

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tressed, grieving children and adolescents. (2) Experimental and control samples usually have very few children with psychopathology (scores). Relatively small changes in scores within the normal range may be in- sufficient to allow measurement of meaningful differences between in- terventions. (3) Both experimental and control interventions must provide sufficient help to retain families for later evaluation. The level of general support and referral for other treatments, if adequately done, may be sufficient to blur differences in standardized psychopathology measure scores between any two interventions. It may only be in the spe- cifically targeted intervention area that differences can be expected to be significant in adequately resourced families. [Article copies available for a

fee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address: <docdelivery@haworthpress.com> Website: <http://www.HaworthPress. com> © 2005 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Bereavement intervention, childhood bereavement, pre- and post-death family intervention, quantitative-qualitative meth- odology

BACKGROUND

Existing evidence suggests that bereaved children constitute a vulnera- ble population at increased risk for social impairment or psychopath- ology, not only during the immediate post-bereavement period, but into adulthood as well (Baker, Sedney, & Gross, 1992; Berlinsky & Biller, 1982; Brown, Harris, & Bifulco, 1986; Harris, Brown, & Bifulco, 1986; Kaffman, Elizur, & Gluckson, 1987; Kranzler, Shaffer, Wasserman, & Davies, 1990; Osterweis, Solomon, & Green, 1984; Raveis, Siegel, & Karus, 1999; Tweed, Shoenback, & George, 1989; van Eederwegh, Bieri, Parilla, & Clayton, 1982; Weller, Weller, Fristad, & Bowes, 1991). The etiological role of bereavement to adult depression remains unclear. Some, after reviewing primarily large studies of psychiatrically hospital- ized depressed patients, question the existence of such a relationship, cit- ing major methodological problems in studies asserting such an assoc- iation (Crook & Eliot, 1980; Tennant, 1988), while others challenge their conclusion that the absence of a connection between childhood parental loss and adult pathologies can be determined by existing studies (Lloyd, 1980; Nelson, 1987). Rather, they point to a range of intervening vari- ables, mediators and moderators (Roosa, Wolchick, & Sandler, 1997;

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Lin et al., 2004) linking parental death and loss to later psychopathology that may have confounded earlier studies. The recognition of the impor- tance of life events (Dohrenwend & Dohrenwend, 1974; Holmes & Rahe, 1967), later refined to stressful life events and their interaction with social support (Compas, Slavin, Wagner, & Vannatta, 1986; Compas, Wagner, Slavin, & Vannatta, 1986; Lin & Ensel, 1984; Monroe, Connell, Bromet, & Steiner, 1986) in the onset of depressive symptoms, provided important perspectives of the greater complexity required to study the role of paren- tal bereavement to adult depression. Of the numerous stressors that have been identified, the role of support and communication from the surviv- ing parent have emerged as singularly important (Bifulco, Brown, & Har- ris, 1987; Bifulco, Harris, & Brown, 1992; Breier, Kelsoe, Kirwin, Wolkowitz, & Pickar, 1988; Harris, Brown, & Bifulco, 1986; Harris, Brown, & Bifulco, 1987; Mireault & Bond, 1992; Raveis, Siegel, & Karus, 1999; Saler & Skolnick, 1992, Sandler, Tremblay, & Israel,

1998).

Numerous clinical interventions designed to mitigate the adverse ef- fects of such a tragedy as parental death have been described (Furman, 1974; Furman, 1981; Zambelli, Clark, Barile, & de Jong, 1988), but few have been evaluated formally, and even fewer have included a compari- son or control group (Tremblay & Israel, 1998). Only two published in- tervention programs, in addition to the present one, have used control or comparison groups. None of these interventions have focused exclu- sively on expected death from disease and none have intervened with children before the death occurs. This paper reports on the evaluation of the relative efficacy of a parent guidance intervention (treatment) com- pared to a telephone monitoring (comparison) intervention for bereaved children that begins during the parent’s terminal illness and continues for 6 months after the death.

CONTROLLED INTERVENTION STUDIES

Black and Urbanowicz (1985) evaluated an intervention offered to 46 families with children younger than 16 years after one parent died. The intervention consisted of six home-based family counseling ses- sions beginning approximately two months after the parent’s death. Sessions were planned to provide emotional support, to help with prob- lem-solving, to encourage communication about the deceased parent, and to facilitate the expression and resolution of grief. Of the 46 fami- lies offered the intervention, 33 started and 22 (67%) completed four to

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six family sessions. The control group consisted of 34 bereaved families who were contacted for the first time 1 year after the death. The inter- ventionists were psychiatric social workers with specialized training in bereavement counseling. A follow-up evaluation, which included a structured interview, was completed one year after the parent’s death and again two years later. Relying exclusively on parents’ reports, the investigators found that children whose families had participated in the treatment group had fewer behavioral and learning problems and a lower incidence of depression and sleep or health problems. They also found that children in the treatment group spent more time talking and crying about the dead parent and that crying was associated with fewer, less serious behavioral problems, especially among children older than five years. The exclusive reliance on parents’ reports and the lack of details about the content of the intervention have been identified as significant limitations of this study (Tremblay & Israel, 1998). In the second study, a family bereavement group program, Sandler and associates (1992) studied a cognitive behavioral intervention at the Prevention Research Center, Arizona State University, funded by the National Institute of Mental Health. The intervention was based on their previously tested interventions of a family advisor program with be- reaved families. The intervention tested the efficacy of approaches in- volving training in parenting skills to reduce stress and build the coping capacities of bereaved children and parents. It was delivered in 11 group sessions with bereaved parents and 11 parallel group sessions with the children. Ninety families (135 children and adolescents and their care- givers) were randomly assigned to the intervention, and 66 families (109 children and their caregivers) were assigned to a comparison group involving self-study with printed materials. All the families were referred to the bereavement program by family service, health, and mental health agencies that were providing mental health services to the families. Sandler and associates suggest that their method of accrual may have accounted for the greater numbers of men- tal health problems reported when the study began than has been found in other child bereavement studies (Worden, 1996). Unique to this cognitive behavioral approach was the opportunity for participants to practice skills in groups with peers before applying the skills at home. The manual-based treatment groups for parents aimed to modify identified mediators of positive mental health outcomes for children who had suffered a major loss: for example, by establishing positive parent-child relationships; stable, positive routines; and effec- tive discipline. Another goal was to protect children from life-event stressors associated with the loss of a parent. To accomplish this goal,

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the investigators taught parents ways to develop positive family activi- ties; improve their listening skills; increase the warmth of family rela- tionships; reduce negative stressors, such as family conflict and parental depression; develop clear expectations and reasonable consequences when expectations were not met (improving discipline); and challenge negative thinking by using positive reframing. The group leaders found that in each session, bereaved parents needed to discuss their own grief process in addition to parenting skills. On the basis of reliable and valid measures of the program’s constructs as well as measures of anxiety, depression, and behavior, the investigators found that the intervention improved the parents’ parenting skills and coping, reduced their stress associated with events, improved their ability to express feelings, and improved their mental health. The skills taught to children and adolescents complemented the skills taught to the surviving parents. Dividing the children into two age groups–7 to 11 and 12 to 17 years–the investigators aimed to increase the children’s sense of control and self-esteem, reduce their negative self-appraisals, and improve their capacity to recognize and express their feelings. At the 11-month evaluation, children exhibited fewer symptoms of anxiety and depression and less externalizing of problems, such as acting out, than did the children in the comparison. However, the effects of the intervention were not uniform across all children in the treatment groups. Those who had more severe problems before they en- tered the program–especially anxiety and depression–experienced greater improvement, and girls exhibited more beneficial effects than did boys. Differences between the treatment and comparison groups had declined by the 2-year follow-up. Mediators of the intervention process included (1) improving the par- ents’ warmth and discipline, (2) reducing the stress associated with events the children were exposed to, and (3) reducing the children’s need to inhibit expression of their feelings. The present study consisted of a parent-guidance (experimental) and a telephone monitoring (comparison) intervention. It differed in three ways from previous interventions. First, the type of death was limited to a sin- gle cause, cancer. We did not include sudden or traumatic deaths, such as those caused by homicide and suicide, because they might be followed by traumatic stress reactions that could obfuscate a child’s responses to the death. Second, the intervention began before the parent’s death so that children’s anticipatory responses could be addressed and families could be helped during this difficult period. Third, in addition to the two be-

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reavement intervention conditions, the study design included a control sample of non-bereaved children. The decision to begin the interventions during the terminal illness was based on clinical experience. We found that the family members’ responses differed substantially during the terminal stage of the illness from responses following the death. This clinical experience was con- firmed by the finding, previously reported, that children were signifi- cantly more anxious and depressed during the pre-death period than at the 7- and 14-month post death follow up (Siegel, Karus, & Raveis, 1996; Siegel et al., 1992).

Sample

METHODS

A total of 275 families meeting the criteria for the bereavement inter-

vention were identified. The eligibility criteria were as follows: the fam- ily was intact; both parents lived in the home, one of whom was being treated at a major urban cancer center; the family spoke English; the family lived within two hours of the cancer center, and the family had at least one child aged 7 to 17 years with no history of serious emotional disturbance. There was no significant difference in rates of retention in the two intervention groups. Two hundred twelve (72%) of the 275 families who met all eligibility criteria agreed to participate and to be randomly assigned to one of two interventions. One hundred eighty-four of these, (87%) completed one of the interventions, and of these, 104 (56%) completed the initial and at least one post-death evaluation. After eligible families were informed that they would be randomly assigned to one of the two interventions and the interventions were described to them, well parents who agreed to participate were asked to sign the consent forms, and assent to partici-

pate was obtained from their children, the family was assigned to the psycho-educational intervention (75%) or to the telephone supportive intervention (25%).

A comparison group of 556 non-bereaved children aged 7 to 17 years

from 434 families from a suburban school system was also selected for the study. Like the bereaved children, these non-bereaved children completed the depression (CDI), anxiety (STAI) and self-esteem (SEA) measures. The median family income in the community from which the children came ($63,275) was comparable to that of the bereaved sample

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($68,902). The control group was large enough to allow a group match with children in the intervention sample on age, gender, and number of children in the household.

Recruitment

Social workers, nurses, and physicians from a major urban compre- hensive cancer center identified cancer patients who were terminally ill and had one or more 7- to 17-year-old children during the five year re- cruitment phase of this seven year study. They discussed their patients’ possible eligibility with a research clinical staff supervisor. The social worker from the patient’s medical unit initially met with the well parent after a physician’s determination that the ill parent’s death was imminent (i.e., the patient had advanced disease with a poor prognosis and an estimated survival time less than or equal to six months). The clinician explained the purpose of the study and the de- mands of participation. If the parents agreed to participate, and the nec- essary informed consents were signed, the children and the well parent were assigned to (1) one of a group of social workers who, along with their supervisors made up the clinical team for the parent guidance in- tervention or (2) one of the mental health professionals who conducted the telephone intervention. Both groups were administered a battery of psychological measures (see below) by mental health clinicians who were not involved in the intervention. The assessments were conducted prior to the implementation of the interventions (Time 1) as well as seven (Time 2) and 14 (Time 3) months after the parent’s death. The in- terventions began shortly after the initial psychological evaluations and concluded approximately six months after the parent’s death. If the child from either treatment group had checked off one of the ‘thinking of self harm’ questions during the baseline assessment, and the inter- ventionist, in collaboration with the parent, assessed this to be a possible problem, an appointment with a child psychiatrist was offered as a part of the intervention program.

INTERVENTIONS

The effectiveness of an experimental (parent guidance) and a compari- son (telephone monitoring) intervention in mitigating children’s reac- tions to the death of a parent from cancer were compared. The exper- imental intervention was psycho-educational, conducted within a

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parent guidance model that indirectly targeted children through interven- tion with the healthy parent. This intervention was chosen based on clini- cal experience, our review of the extensive clinical and research literature and was refined by a series of pilot studies. The bereavement literature continues to identify the quality of child care after the loss and the child’s relationship with the surviving parent as the mediators most consistently affecting the course and outcome of the child’s bereavement (Bifulco, Brown, & Harris, 1987; Breier, Kelsoe, Kirwin, Wolkowitz, & Pickar, 1988; Harris, Brown, & Bifulco, 1987; Saler & Skolnick, 1992; Sandler et al., 1992; Tennant, 1988; Worden, 1996). The aim of the intervention was to affect the children’s adjustment to the loss by enhancing the sur- viving parents’ ability to (1) sustain competence beyond the time of the intervention in providing support and care for the children, (2) provide an environment in which the children felt able to express painful or conflict- ing feelings, thoughts, and fantasies about the loss, and (3) maintain con- sistency and stability in the children’s environment. Parents were provided with the support, knowledge and insight that would enable them to pro- mote conditions to foster their children’s necessary grief work and resolu- tion of the loss. Interventionists also supported the parents through their own grief work in order to enhance their capacity to function effectively during this family crisis. More specific details about this intervention and issues faced in its implementation have been published (Christ, Siegel, Mesagno, & Langosch, 1991; Siegel, Mesagno, & Christ, 1990). Parent Guidance Intervention: The parent guidance intervention was designed to span about 12 months, and included six or more 60- to 90-minute therapeutic interviews during the terminal stage of the ill- ness and six or more after the death. The sequence of interviews, most of which were carried out in the family home, included one or two ini- tial interviews with the well parent. The first interview emphasized background data about each parent and child and about the cancer ill- ness, the second emphasized the therapeutic engagement. However, in all meetings, including the initial assessment, the interventionist en- gaged in problem solving around the immediate crisis of the patient’s deteriorating condition. The family was quickly engaged in reviewing communication within the family, about the often rapidly changing events. Meetings could include the patient if the patient was physi- cally able and wanted to participate. Ways of handling emerging prob- lems with the children and current approaches to communication about the terminal illness were also discussed at each meeting. A sepa- rate interview was then done with each child to make an independent evaluation of their adaptation to the parent’s impending death and

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their perceptions of and reactions to family communication and func- tioning. This was followed by a meeting with the parent(s) in which the parent(s) was given feedback on the findings from the assessment of the children’s adaptation to the illness. Suggestions were made about ways to modify the family’s approach. Such suggestions gener- ally included urging more extensive preparation of children for the likely progression of the illness, reviewing specific words and con- cepts for talking about illness, treatments, and death that children at different developmental levels have found helpful, and exploring how the parents own feelings might alter their perception of their children’s needs or their ability to meet them. Parents were encouraged to access additional support from grandparents, friends, relatives, teachers and school personnel, clergy and others in the community to build a net- work of support that would sustain the family over time. Frequently discussed in these meetings was the parent’s decision-making about additional treatment as standard treatments failed and more experi- mental options were presented to them. The intervention addressed, for example, the impact of such decisions on the amount of quality time parents might have with their children. These interviews were followed by a family interview that included the well parent and all of the children in that family. They reviewed their approach to managing the family crisis and discussed ways they might improve communica- tion and interaction. This was followed by two or more bi-weekly to monthly parent interviews that generally concerned specific ways to plan for and respond to the impending death and funeral rituals. A similar schedule of interviews was followed starting two to four weeks after the death of the parent. These interviews focused on resolv- ing differences in each family members’ expression of grief that was so often misunderstood with a goal to understand gaps in communication that may have emerged. Helping children with their grieving and help- ing parents to provide opportunities for children to express their grief and providing additional support to them was also a primary goal. Par- ents were helped to accommodate to changed roles and responsibilities, and to effectively reconstitute relationships without the presence of the parent who died. The post death family sessions were often particularly significant in furthering the acceptance of the loss but also in under- standing the implications of the new family unit. With help, even the youngest children were able to voice their problems with the emerging reconstitution (e.g., unfair allocation of jobs), but also their appreciation of aspects that were going well. When appropriate and requested, addi-

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tional child and/or family interviews were scheduled. The forms for each session and their definition are summarized in Table 1. After the final interview, the social worker initiated bi-monthly to monthly telephone contacts as needed with the surviving parent until the final post-death psychological assessment was completed about 14 months after the death of the parent. If significant family crises emerged either during the mental health clinician’s final assessment or the social worker’s final telephone contact, additional telephone contacts were scheduled. When necessary, individual parent, child and/or family sess- ions were offered. Interventionist training and supervision was an integral part of the project. Each of the 6 social workers who formed the intervention team had at least five years’ post-masters experience working in a medical or mental health setting. The social workers received extensive written and verbal descriptions about the goals of the intervention, their role in meeting these goals, the types of material that would be elicited from children and parents, and the type and quality of notes that would be kept after each scheduled and unscheduled contact. Ongoing training was provided through weekly individual and group supervisory meet- ings. The first author coordinated and supervised the clinical program. The social work interventionist filled out a lengthy 10-14 page semi-structured form following each interview session. Different forms were developed for each pre-death and post-death interview that reflected the intent of that interview. These ten forms and their sub-headings were developed not as headings for a semi-structured interview, but rather to remind interviewers about the general topic areas that should be covered and to serve as a pedagogic guide for the interventionists. Table 1 lists the ten forms. As indicated in the table, a number of them might require two or more sessions to complete. For example, one major heading in the child’s post death session form (Form 7) is titled “evaluation,” and has 13 sub-headings (e.g., “child’s adaptation,” “school performance and behav- ior,” “coping strategies”), some with additional subheadings (e.g., “pro- cess of being informed,” “changes to the family life style”). Another example is the final pre-death parent interview form (Form 6) titled “Preparation for death and issues related to loss,” which has 15 subhead- ings (e.g., “discuss severity of parent’s illness,” “explore what each child knows and believes about the parent’s death,” “educate parent about value of children’s participation in rituals such as wake, funeral, burial”). These notes were used to aid in the supervisory process, but were also in- tended to facilitate a qualitative analysis (Christ, 2000). Detailed written notes were kept of all telephone contacts with or about the family.

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TABLE 1. Parent-Guidance Interview Forms

Pre-death interview titles:

Form 1a-n*

Well parent interview. Establish therapeutic alliance, obtain com- prehensive history, initiate psycho-educational and supportive in-

Form 2a-n:

tervention (continued in each session). Each child - individual interview.

Form 3a-n: Well parent, feedback of children's current state, discuss parental role.

Form 4:

Family session, well parent and all children.

Form 5a-n:

Well parent, preparation for death and issues related to loss.

Post-death interview titles:

Form 6a-n:

Well parent. Discuss death, funeral, each family member's reac-

Form 7 a-n:

tions, mourning. Each child - individual session.

Form 8 a-n:

Well parent, feedback and discuss parent’s role

Form 9:

Family session, well parent and all children.

Form 10 (a-n):

Well parent, preparation and planning for future.

*1a-n indicates that the same form may be used for more than one interview.

Telephone Supportive Intervention: The comparison intervention was a telephone support intervention that was designed to ensure that families assigned to this controlled condition of standard social work services would be offered all available services provided by the hospital and the community. Following the initial assessment evaluation and feedback to the parents, the clinician telephoned the well parent every four to eight weeks. The goal of this intervention was to maintain contact with the well parent between psychological evaluations and to provide referrals to re- quested services rather than engage in in-depth problem solving. Refer- rals were made to community based therapists or support groups when such a referral was requested, or to appropriate hospital personnel when questions such as uncertainty about planned treatment procedures, bill- ing, or untoward reactions of the ill parent were raised by the well parent. The major focus was on referral to appropriate resources within and out- side the hospital system rather than problem solving by the mental health evaluator. Following the initial assessment at Time 1, one of the mental health evaluators provided feedback to the parent about the children’s ad- aptation and maintained telephone contact with the family every 4-8 weeks until the assessment at Time 2 and Time 3 about 8 and 14 months after the parent’s death. The telephone contacts typically lasted approxi- mately 30 minutes, beginning with an inquiry about each family member, and including responses to any questions or requests for help.

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Measures

Children’s measures: Children in both intervention conditions and in the community control sample completed the Children’s Depression Inventory

(CDI) (Kovacs, 1992), a 27-item self-report inventory that assesses chil- dren’s depressive symptomatology in the past 2 weeks. Each item consists

of three statements, graded in severity, that are assigned values from 0 (not

severe) to 2 (severe). They also completed the Self-Esteem Inven- tory–Short Form (SEI) (Coopersmith, 1984), a 25-item inventory that taps

areas of experience (social, academic, family, and personal) likely to inter- act with the self-esteem of children. For each item, children indicate whether the statement is “usually” either “like me” or “unlike me.” Each statement indicating positive self-esteem is scored 4; each statement indi- cating negative self-esteem is scored 0. Raw scores range from 0 to 100, higher values indicating higher self-esteem. Children also reported directly on their symptoms of anxiety. Those who were younger than 12 years old completed the State-Trait Anxiety Inventory for Children (STAIC); those who were 12 years old or older completed the State-Trait Anxiety Inven- tory for Youth (STAIY) (Spielberger, Edwards, Lushene, Montuori, & Paltzek, 1973; Spielberger, Lushene, Vagg, & Jacobs, 1983). Both mea- sures contain 20 items tapping state anxiety (“how you feel right now”) and 20 items tapping trait anxiety (“how you generally feel”). State anxiety identifies temporarily elevated anxiety, whereas trait anxiety identifies children prone to generalized anxiety. The STAIC is based on 3-point items, with a raw score ranging from 20 to 60, whereas the STAIY contains 4-point items, so the raw score ranges from 20 to 80: higher scores indicat- ing greater anxiety. Conversion of raw scores to age and gender-specific linear T-scores allows aggregation of data across age groups. Measures given only to children in the bereavement intervention con- dition: Although family communication about the cancer diagnosis, the illness, and the death are important (Becker & Margolin, 1967; Black & Urbanowicz, 1987; Cohen, Dizenhaus, & Winget, 1977; Furman, 1974; Greenberg, 1975; Rosenthal, 1980), no standardized instruments that measure family communication about such troublesome problems exist.

A total of 53-items were included in what was referred to as the Percep-

tion of Parenting Measure (POPM) for the study (Siegel, Raveis, &

Karus, 1996). Four items in the POPM were written to assess the child perceptions

of how consistently the well parent facilitated general communication

(General Communication Measure, range 0-12, Cronbach’s alpha = .79). The items in this measure asked the children (1) How often does

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your well parent makes it easy for you to discuss things that are bother- ing you? (2) How often do you feel that your well parent really listens to you? (3) How often does your well parent want to hear what you think about things that are going on in the family? and (4) How often does your well parent ask questions to make sure he/she really understands what is bothering you? Four other items were written to assess the children’s perception of how open the well parent was to discussions about topics related to illness and death (Illness-and Death-Related Communication Measure, range 0-12, Cronbach’s alpha = .75). These items asked (1) the degree to which the child felt the well parent understood that the child needed to know about the parent’s illness even if it might make the well parent sad, (2) how often the well parent told the child things about the ill par- ent’s illness without the child having to ask questions, (3) how often the well parent answered the child’s questions about the ill parent’s illness and death, and (4) how often the well parent got mad when the child asked questions about the ill parent’s illness and death. Higher scores in- dicated a more favorable assessment by the child (Siegel et al., 1996b). For each item, children are instructed to choose one of four responses (“Never,” “A little of the time,” “A lot of the time,” and “Almost al- ways”), resulting in scores ranging from 0 to 159, with higher scores indi- cating a more favorable assessment of the surviving parent’s parenting. Parent measures: Parents rated their children’s behavior using the Child Behavior Checklist (CBCL) (Achenbach & Edelbrock, 1983), which con- sists of 20 items about social competence and 118 items about behavior problems and is used extensively in studies of children’s adjustment. Par- ents rate their children’s behavior problems on a 3-point scale indicating whether each behavior problem is “not true” (0), “somewhat or sometimes true” (1), or “very or often true” (2), now or in the past six months. This scale provides a Total Behavior Problem score and a Total Social Compe- tence score as well as scores on two broad-band behavioral syndromes (in- ternalizing and externalizing), several age and gender-specific narrow- band behavioral syndromes, and three specific social competence subscales (activities, school, and social competence). Among the parents in the intervention samples and those in the control group sample, 64.5% and 40.3%, respectively, returned completed CBCLs.

Analysis

Quantitative methods were used to assess children’s anxiety, depres- sion, self-esteem, behaviors, and communication over time; to evaluate

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the outcome of the intervention; and identify factors contributing to the children’s outcome. Statistical tests included analysis of variance (ANOVA). Multivariate analyses, including linear regression, were used in the study. Because children in a family were subject to the same contextual factors, the findings for multiple children in a given family could have been correlated with each other, and the impact of a particu- lar parent or family characteristic on outcome measures could be artifi- cially inflated. Therefore, the data from families with more than one age-eligible child were weighted so that each family received an equal unit weight. Six percent of the study children were Hispanic of any race, 4% were black, and 7% of children were from racially mixed families. Minority families were eliminated from the reported quantitative analy- ses because, although they differed significantly from whites regarding socioeconomic status, they represented only a small proportion of the total sample (16%), with an insufficient number of families of any one minority to analyze separately. Qualitative methods provided a comprehensive description of chil- dren’s experience of a parent’s death and informed interpretations of quantitative results. The results of the qualitative analysis have been reported (Christ, 2000).

RESULTS

Sample Accruals and Participation:

The detailed breakdown of accruals, intervention and assessment participation are presented in Table 2. While rates of completion of the intervention were high, approximately one-third of the sample com- pleted only the initial assessment (T1). An additional 17 families com- pleted only the post-death evaluations (scheduled 8 (T2) and 14 (T3) months after the parent’s death) because the ill parent died before the first assessment could be performed. One hundred and four families in the bereavement intervention completed the baseline assessment and one or both post-death evaluations. These families are the basis for this analysis. The rates of compliance of families participating in the two interven- tions did not differ significantly. Reasons given for non-participation in the post-death assessments included concern about “stirring up” the children’s emotions. As one father said, “If they get upset again, there will be no one to help me pick up the pieces.” Some families moved to

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TABLE 2. Accrual of Families to Interventions & Compliance with Psychologi- cal Testing.

Eligible to participate

275

Agreed to participate:

212

Dropped out before completion:

28

Completed intervention:

184

N

TG1

TG2

Total

% of Total

4

137

5

47

184

T1 1 only

T2 2 or T3 3 only

T1&T2&/orT3

45

13

79

18

4

25

63

17

104

34%

9%

56.5%

T1 1 Initial psychological testing; T2 2 Retesting at 8 months after death; T3 3 Retesting at 14

months after death; TG1 vention

Parent-guidance intervention; TG2 5 Telephone monitoring inter-

4

another region of the United States around the time the intervention was completed; others had recently remarried or were engaged and believed that their own and their children’s investment was in the present and the immediate future, not in the past. Some children, especially the adoles- cents, refused to retake tests they had previously completed. No finan- cial incentives were offered to encourage participation in evaluation sessions.

Role of Age and of Gender of Parents and Children:

Forty-eight percent of the study children were girls, and 58% of the surviving parents were mothers. A series of analyses were undertaken to determine the role of the surviving parents’ gender, the children’s age and gender in relation to emotional distress. Multiple regression analy- ses showed that girls with a surviving father experienced significantly less decrease in state anxiety and depressive symptoms after the death between Time 1 and Times 2 and 3. Ten percent of the variance in state anxiety score change from pre-death to post-death was accounted for by being a girl with a surviving father. Four other independent variables were also entered (child age group (7-11, 12-18), length of the ill par- ent’s survival, number of pre-death interviews and number of post- death interviews, but did not reach significance and did not contribute to explained variance (r = .275, beta = .278, R 2 = .10, p = .01). Similarly, 10% of the variance in depressive symptoms score change from pre-death to post-death when compared to other children was ac- counted for by being a girl with a surviving father. Four other inde-

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pendent variables were also entered (child age group (7-11, 12-18), length of the ill parent’s survival, number of pre-death interviews and number of post-death interviews) but did not reach significance and did not contribute to explained variance (r = .277, beta = .325, R 2 = .10, p =

.01).

Children’s Rating of Parental Competence:

Analysis of variance estimated the relative importance of the child’s gender and age group (7-11 and 12-18 years) and the surviving parent’s gender as predictors of general communication using scores on the POPM General Communication Measure. Higher communication scores were as- sociated with having a well mother (F = 7.86; df = 1; p = .006), and lower scores were associated with being 12-years-old or older (F = 6.47, df = 1, p = .013). There also was a significant interaction between the well parent’s gender and the child’s age (F = 5.77; df = 1; p = .019). Younger children living with a well father or well mother and older children living with a well mother displayed significantly better scores than did older children living with a well father (Ms = 9.0, 9.3, 9.2, and 6.4, respectively, on the General Communication Measure ( p < .001).

COMPARISON OF THE EFFECTIVENESS OF TWO INTERVENTIONS

Although the two interventions did not result in significantly differ- ent scores on the depression (CDI) and anxiety (STAIC/STAIY) mea- sures, there was a consistently greater decline of scores (i.e., meaning less anxiety and depression) between T1 and T2 and T3 in the group that received the parent-guidance intervention. As indicated in Table 3, the difference in change in trait-anxiety scores alone approached signifi- cance (p < .10). The self-esteem (SEI) scores of the children who partic- ipated in the parent-guidance intervention increased more (i.e., meaning better self-esteem) between Time 1 and Times 2 and 3 than did scores of children who participated in the telephone-monitoring intervention, al- though this difference did not reach significance. The parents’ ratings of their children’s social competence on the CBCL was not significantly different in the two groups. Children who participated in one of the two interventions differed at Time 2 and 3 in their perceptions of their surviving parent’s competence and general communication. Children in the parent-guidance interven- tion perceived their parent’s overall competence (POPM total) and gen-

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TABLE 3. Comparison of Response to Two Interventions

SCALE

CDI 1

STAI 2 state

SEI 3

trait

CBCL social c. 4

behavior prob. 5

POPM 6 total

GCM 7

IDRCM 8

+ p .10

* p .05

 

TIME

TG1 11

TG2 12

N

Mean (SD)

 

N

Mean (SD)

T1

75

10.2 (8.1)

22

9.2 (5.8)

T p.d. 9

7.0 (7.0)

 

7.1 (5.9)

 

10 3.2 (7.8)

 

2.1 (7.0)

T1

73

52.6 (11.5)

 

21

50.4 (10.1)

T

p.d.

45.3 (10.5)

 

47.9 ( 8.6)

 

7.3 (14.7)

 

2.5 (11.7)

T1

73

51.0 (12.4)

 

21

48.7 (11.8)

T

p.d.

45.5 (11.9)

 

48.4 (10.8)

 

5.5 (12.4)

 

0.3 (11.2) +

T1

74

66.2 (19.6)

 

20

70.7 (18.3)

T

p.d.

75.6 (20.0)

 

74.7 (19.2)

 

9.4

(18.5)

3.9 (25.1)

T1

39

45.6 (10.6)

 

14

48.2 (11.8)

T

p.d.

46.9 ( 9.7)

 

45.5 (11.9)

 

1.2 ( 8.4)

 

2.7 (13.6)

T1

41

55.2 (9.8)

 

14

49.2 (11.0) +

T

p.d.

53.5 (11.0)

 

49.8 (12.6)

 

1.6 ( 9.1)

 

0.6 ( 7.8)

T1

59

72.2 (13.6)

 

22

68.7 (17.9)

T

p.d.

74.9 (15.2)

 

65.9 (15.1) *

 

2.8

(14.0)

2.7 (13.3)

T1

58

8.9

(2.2)

21

7.8 (3.2)

T

p.d.

9.1

(2.4)

7.6

(2.8) *

 

0.2

(2.5)

0.2 (3.1)

T1

57

9.3

(2.4)

21

10.1 (1.6)

T

p.d.

9.5

(2.3)

9.5 (1.9)

 

0.1

(2.5)

0.6 (2.2)

1 CDI: Children’s Depression Inventory;

3 SEI:Self Esteem Inventory;

4

2 STAI: STAIC & STAIY state and trait anxiety T

scores;

scale;

7 GCM: General Communication Measure part of POPM;

lated Communication Measure part of POPM;

Change from T1 to T2 or T3; 11 TG1: Parent Guidance Intervention; 12 TG2: Telephone

Monitoring Intervention

5 CBCL: behavior problem measure; 6 POPM: Perception of Parenting Measure;

CBCL: Child Behavior Check List social competence

9 Tp.d.:

8

IDRCM: Illness and Death Re-

T2 or T3 evaluation after death; 10 :

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eral communication (POPM General Communication Measure) as significantly better at Times 2 and 3 than did children in the other inter- vention. In fact, the children in the telephone-monitoring intervention reported worsening parental competence and reduced communication at Time 3 compared to Time 2. Younger children (those aged 7 to 11 years) in both interventions scored their parents as facilitating commu- nication better than did older children (M = 9.2 versus 8.0, p < .05). The well mothers were perceived as facilitating communication more than well fathers (M = 9.2 and 7.5, respectively; p < .01). Unlike children’s age, children’s gender did not influence their assessment of how much the parent facilitated communication. The ratings of the Illness and Death-Related Communication questions by the children were uniformly high (M = 9.1 and 9.8, respectively, out of 12 possible points), and neither the children’s age or gender nor the parents’ gender distinguished better or worse patterns of communication. Parental Satisfaction with the Intervention: Parents who participated in the parent-guidance intervention were asked to fill out an extensive questionnaire on their satisfaction with the content of the intervention, the length of the intervention, and the skill of the interventionist after completing the T3 evaluation. Of the 71 families that completed T3, 65% returned the questionnaire. Content: All were very (69%) or some- what (31%) satisfied with the program’s focus on the children’s needs and concerns. They were also very satisfied (84%) and somewhat satis- fied (13%) with the help and support they themselves received. Twenty percent felt there should have been more frequent direct contact with the children, and 9% felt they would have preferred having some group meetings with other families. Length: While 51% felt the length of the intervention was just right, 42% felt it should have been longer and only 7% felt it was too long. Eighty percent of the parents rated the interventionist’s supportive- ness, ability to understand their concerns, clarity of presentation and knowledge and skill as excellent on all four attributes. Only 3% rated the interventionist as “fair” on one of these four attributes. Written sug- gestions related to parents’ feeling that it would have been helpful if the intervention continued beyond the six-month post-death period as they were in many instances just entering an intense period of their own grieving when the intervention was terminated. They also commented on a desire to have the children seen more frequently by the clinicians, wanting more help in meeting the needs they perceived their children to have.

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DISCUSSION

75

The parent-guidance intervention was chosen to ameliorate children’s reactions to the death of their parent by enhancing critical mediators–pa- rental competence, communication with the child and maintenance of stability and constancy. The intent of this psycho-educational interven- tion was to improve current parental care of children, and empower sur- viving parents with the knowledge and skills to prevent or ameliorate future bereavement-related despair. In contrast, the telephone monitoring intervention was developed to ensure that each family assigned to this in- tervention would have help clarifying issues and needs and be directed to the best available resource within the hospital and their communities to resolve these problems. Some of the findings from the post-treatment evaluations support the greater effectiveness of parent-guidance intervention over the tele- phone monitoring approach. However, it was surprising that the chil- dren of parents who participated in either intervention improved equally (about one half standard deviation) on measures of depres- sion, anxiety, and self-esteem between the pre-death (T1) and post death (T2 and T3) assessments. Although improvements in the parent guidance intervention group were consistently greater, only trait anxi- ety approached significance (p < 0.10). What was notable is that it was in the area that was the specific focus of the parent guidance intervention that the two groups diverged. Par- ents who participated in the parent guidance intervention received sig- nificantly better ratings in parenting skill and communication by their children, ratings that continued to improve from T2 to T3. Scores of par- ents who participated in the telephone monitoring intervention did not improve, and their scores became worse from T2 to T3. Four factors may have shaped these results. First, children and ado- lescents who were accepted in this program had no evidence of pre-ex- isting psychopathology, therefore the room for improvement in anxiety and depression scores for both groups was quite small. Related studies with children have shown that those with more symptoms of anxiety and depression at entrance into the study show greater improvement (Sandler et al., 2004). For example, 41% of the children in Sandler’s study had clinically significant problems reported on the Child Behav- ior Checklist, as opposed to 19% of the children in a bereavement study conducted at Harvard University (Worden, 1996). Secondly this intervention study is consistent with others that demon- strate significant change in those behaviors that are the primary focus of

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the intervention. For example, Sandler documented improvements in par- ents’ warmth, positive experiences with their children, and discipline; our parent guidance intervention demonstrated improvement in the chil- dren’s perception of their parent’s competence, and that effective com- munication improved. Thirdly, it could also be argued that the child report measures were not sufficiently sensitive to bereavement-related distress as experienced by children in an adequately resourced middle class population. Only during the intense crisis atmosphere of the terminal illness of the parent was the distress in our sample sufficient to be reflected in higher depression scores. Our own post death T-scores on the CDI are 45. Findings from two recent studies of untreated bereaved children have also reported low depression (CDI) scores similar to our own. Raveis et al. (1999) evalu- ated untreated bereaved children 3 to 14 months after the parent’s death and reported CDI T-scores of 44.3 (S.D. 7.8). Saldinger et al. (1999) re- ported on 2 groups 8-36 months after the parent’s death; children whose parent died suddenly, (CDI-T scores of 47.9), and those whose parent had an expected death (CDI-scores of 43.6). Lack of sensitivity of the mea- sure to these situations has been suggested as one explanation. Measures of psychopathology may be inadequate for the measurement of children’s grief, mourning, sadness and the more subtle, but clinically important be- havioral changes such as temporary decrease in ability to concentrate in school. Newer measures being developed that assess the presence of nor- mative and complicated grief in children and that take into account trau- matic stress symptoms (Layne, 2000) may discern different patterns. Fourth, while providing alternative treatments in the same institution increases the likelihood that the groups before treatment are similar on important demographic characteristics and have similar treatment experi- ences, it also heightens the awareness of all staff in the institution about the stresses inherent in the situation and they are more likely to perceive a need for intervention. Referrals for counseling were recommended by a broad range of hospital staff and other families. The families who were positive about the help they were receiving in the experimental interven- tion spoke freely about this to their physicians, to the social workers on the medical units, and to other families. The data from both interventions showed that the death of a mother emerged as a greater risk factor than the death of a father, especially for adolescent girls. Surviving fathers may require more intensive interven- tion, not only to help them with higher levels of depression (Siegel, Karus, Raveis, Christ, & Mesagno, 1996) but also to help them adapt to complex role changes required to reconstitute relationships with chil-

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dren without the mother’s day-to-day presence. One explanation for the lower anxiety and depression scores after the parent’s deaths could be that they reflect the effective therapy provided to adults and children through both interventions. This interpretation of our results is sug- gested by Saldinger et al. (Saldinger, Cain, Kalter, & Lohnes, 1999), who believed that the improvement of depression (CDI) scores after the parent died in our sample was likely influenced by the effect of the interventions before the death. These results and the parents’ positive responses to the parent-guidance intervention are also encouraging. The psycho-educational approach and parent guidance model that informed the intervention content and design was effective for these families. For the small but important group of chil- dren whose depression and anxiety scores did not improve after the death, the parent-guidance intervention was not sufficient to ameliorate their dis- tress. We concluded that these children who were not reconstituting in a timely way may require more intensive services than parent guidance can offer. Parent’s suggestions for availability of counseling over a more ex- tended length of time and with more direct intervention with children are useful. Longer term follow-up of bereaved children may help to understand the various contexts in which children reflect delayed or compromised re- constitution.

CONCLUSION

An important finding from this study was that both children and par- ents valued and felt helped by an educational and supportive intervention, not only after the death, but also during the terminal illness of a parent. Our experience demonstrated that children could be interviewed during this difficult time without increasing their anxieties. We found that it is possible to engage families despite all the turmoil and demands that were placed on them. Most practitioners have acknowledged that although the period of the parent’s terminal illness is filled with anxiety and distress for all families, especially those with young children, it has been difficult to structure an intervention families can use. No previous interventions during the parent’s terminal illness have been formally evaluated. We think two factors contributed to the positive reception to this intervention. (1) The choice of offering services in the home was welcomed at such a crisis filled time. It offered the possibility of limiting further drain on the families’ own resources, resources that are generally overextended when a parent is dying. (2) Focusing on parent education, developing better

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ways to manage intense emotions and improve family communication rather than using a more emotion-focused approach fostered a more real- istic understanding of the complex situation. It made it possible for us to provide ideas about positive coping strategies and to provide timely crisis intervention. It is possible that this may also have resulted in our interest- ing surviving fathers. Forty percent of our surviving parents were fathers, about the ratio of all younger adult parents treated in this institution. Many parents indicated they wanted the intervention to extend beyond the 6 months post death period, and they also wanted more intervention directly with their children. Families improved with both interventions. However the intervention that was specifically aimed at communication resulted in enduring effects on the parent child relationship. This is con- sistent with findings that have emerged across several other studies; that the specific behaviors that are the focus of the intervention can be altered. In our study, parent child communication and parent competence distin- guished between the two groups and continued to improve over.

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Date Received: 09/14/04 Date Revised: 02/01/05 Date Accepted: 02/11/05