Journal of Pediatric Psychology, Vol. 27, No. 8, 2002, pp. 711-716
© 2002 Society of Pediatric Psychology
Integrated Sibling-Parent Group Intervention to Improve Sibling Knowledge and Adjustment to Chronic Illness and Disability
Rhode Island Hospital and Brown Medical School
All correspondence should be sent to Debra Lobato, Department of Child and Family Psychiatry, Rhode Island Hospital, 593 Eddy Street, Providence, Rhode Island 02903. E-mail: Debra_Lobato{at}Brown.edu.
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Abstract |
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Objective: To evaluate an integrated group intervention for siblings and parents designed to increase sibling understanding of and adjustment to chronic illness and developmental disability (CI/DD).
Methods: Fifty-four well siblings (ages 8-13 years) and their parents were recruited through hospital-based and community agencies serving children with CI/DD. Measures of sibling knowledge, sibling adjustment to the disorder, sibling connectedness, and sibling global behavioral functioning were collected before and after the intervention. A subsample of 20 families completed a 3-month follow-up to assess maintenance of results.
Results: Sibling knowledge of the child's disorder and sibling connectedness increased, while sibling reports of negative adjustment to the disorder and parent reports of sibling global behavioral functioning decreased significantly from pre- to posttreatment for both boys and girls, regardless of the type of diagnostic condition. Improvements in sibling knowledge, connectedness, and behavioral problems maintained at 3-month follow-up. Parent satisfaction with the program was high.
Conclusions: Results support the future conduct of more controlled evaluation of the integrated sibling and parent group intervention model to improve sibling knowledge of and adjustment to CI/DD.
Key words: siblings; chronic illness; disability; family treatment; group therapy.
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Introduction |
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Siblings of children with chronic illnesses and developmental disabilities (CI/DD) are two to three times more likely than their peers to experience psychological adjustment problems (Cadman, Boyle, & Offord, 1988
;
Sahler et al., 1994). Within
their families, siblings may experience extra caregiver burden, differential
treatment, and an imbalance of family resources
(McHale & Gamble, 1989;
Quittner & Opipari, 1994).
Outside their families, siblings may experience limited access to information
about the child's condition, negative peer reactions, and disruptions in
social activities (Bluebond-Langner,
1996).
Psychoeducational sibling group interventions have been developed to
improve sibling knowledge of and adjustment to chronic illnesses or
disabilities (e.g., Lobato,
1990; Meyer & Vadasy, 1993). Empirical evaluations of sibling
programs demonstrate prepost increases in siblings' knowledge of the child's
condition and high consumer satisfaction ratings (e.g.,
Dolgin, Somer, Zaidel, & Zaizov,
1997; Williams et al.,
1997). Few studies have measured sibling emotional or behavioral
functioning secondary to group treatment and the results are not conclusive
(Dolgin et al., 1997;
McLinden, Miller, & Deprey,
1991).
Despite evidence that sibling and parent adjustment are interrelated
(Fisman et al., 1996), parents
typically have not been incorporated into sibling group interventions. Thus,
the purpose of this project was to develop and evaluate an integrated group
intervention for siblings and parents of children with CI/DD that we entitled
"SibLink." The intervention focused on 8-13-year-old siblings, as
this age group has received the greatest attention in the sibling literature
(Stoneman & Berman, 1993).
This article presents the preliminary evaluation of the intervention on the
primary SibLink goals of improving sibling knowledge, sibling adjustment to
CI/DD, and siblings' sense of connectedness to other children in similar
family circumstances (hereafter referred to as "sibling
connectedness").
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Method |
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Recruitment
SibLink was offered as an outpatient service at a northeast urban children's hospital. Families responded to flyers or to informational meetings at the hospital clinics and at local community agencies serving children with CI/DD. Participants were neither solicited nor excluded on the basis of identified sibling behavioral problems. Families whose children were in the end-stage of illness or who had been diagnosed less than 6 months prior to the study were excluded. Parent consent and sibling assent were obtained prior to participation in the research, which had approval of the hospital's institutional review board.
Participants
The sample consisted of 54 well siblings (24 boys, 30 girls) and their 47
parents (in seven cases, two well siblings from the same family participated).
The siblings ranged in age from 8 to 13 years (M age = 9.8 years).
Approximately half of the siblings (57%) were older than the child with CI/DD.
The children with CI/DD (33 boys, 14 girls) ranged in age from 1 to 16 years
(M age = 8.7 years) and were diagnosed with the following types of
disorders: physical disabilities (26%), autism spectrum disorders (23%),
mental retardation (21%), medical disorders (17%), or combined psychiatric and
learning disorders (13%). The majority of the siblings were from two-parent or
stepparent (87%), Caucasian (89%) families. Most families (89%) contained two
or three children. Most families (65%) were at a technical or professional
level, with a median annual income of $50,000 plus.
Evaluation Procedures
Pre- and Posttreatment. Within 2 weeks preceding the first group
meeting, parents and siblings completed separate structured interviews and
questionnaires. All questionnaire items were read aloud to each child; parents
completed written questionnaires independently. Siblings and parents returned
for posttreatment evaluation within 2 weeks of the last group session. The
same parent (94% mothers) completed the pre- and postevaluation
questionnaires.
Three-Month Follow-Up. In the last 2 years of the project, we received funding from a private foundation to conduct an additional evaluation 3 months posttreatment. Of the 30 families who participated during this time period, 20 completed the extra post-3-month evaluation and were compensated $20.00. There were no significant differences in demographics between the 20 families who completed the 3-month follow-up, the families who declined the follow-up, or the rest of the sample.
Evaluation Measures
Sibling Knowledge of CI/DD. A structured interview and scoring
system (available upon request) were developed to assess the level of accuracy
of siblings' knowledge of their brother/sister's disorder in terms of knowing
the name of the disorder and being able to explain it. First, siblings were
asked to name the child's disorder. Responses were coded on a scale of 1 to 3,
ranging from not knowing the name to stating a specific and accurate term.
Siblings were then asked to explain the child's disorder in terms of
characteristics such as core symptoms and treatment. Siblings' ability to
explain the condition was coded on a scale of 1 to 5, ranging from no
understanding to accurate understanding. To assess interrater reliability, two
coders independently rated 18% of the sibling responses to the knowledge
interviews. Coders were blind to participant identity and time of evaluation.
Chance-corrected agreement (
) was 100% for name of the disorder and 89%
for explanation of the disorder.
Sibling Adjustment to CI/DD. The Sibling Perception Questionnaire
(SPQ) was originally developed to measure school-age siblings' responses to
childhood cancer (Sahler & Carpenter,
1989). The four original subscales of the SPQ assess sibling
interpersonal relationships, intrapersonal responses, fear, and communication
about the illness. The SPQ has been adapted for use with siblings and parents
of children with other diagnostic conditions by replacing the word
"cancer" with generic terms such as "problem"
(Hodapp, Wijma, & Masino,
1997). Siblings completed the adapted SPQ by rating items on a
scale of 1 (never) to 4 (a lot). In order to assess parent perception of
sibling adjustment to CI/DD, we created a parent version of the SPQ (available
upon request) on which parents completed items parallel to those of the
sibling SPQ. Due to low individual subscale reliabilities for the four
original subscales for both siblings and parents, we combined the
interpersonal, intrapersonal, and fear subscales to form an 18-item composite
Negative Adjustment scale on which higher scores reflected more negative
sibling adjustment to CI/DD. The alpha coefficients for the composite Negative
Adjustment scale were .79 (siblings) and .74 (parents).
Sibling Connectedness. Siblings and parents responded to a three-item questionnaire (available upon request) to assess sibling sense of connectedness (e.g., "I have met other kids with brothers or sisters who have problems"). Each item was rated on a 4-point Likert scale ranging from "1 = never" to "4 = a lot." Internal consistency of the measure of sibling connectedness was .73 (siblings) and .86 (parents). The mean scale score was used in analyses.
Sibling Global Behavioral Functioning. The Child Behavior
Checklist Ages 4-18 (Achenbach,
1991) was administered at pretreatment to obtain a measure of
global behavioral functioning that could be used to compare our sample to
normative groups as well as to previous sibling research samples.
Additionally, anticipating the possibility of mixed responses to the idea of
bringing children together to discuss disability-related issues, the CBCL was
repeated at post- and 3-months-posttreatment to monitor for any negative side
effects of group
participation.1
Participant Satisfaction. At posttreatment, parents anonymously rated their overall satisfaction with the intervention on a scale from 1 = "not at all satisfied" to 5 = "very satisfied."
Treatment
The SibLink intervention consisted of six 90-minute group sessions
conducted over a 6-8-week period and detailed in separate parent and sibling
group treatment manuals (available upon request). Two sessions targeted
improving sibling knowledge and family information exchange. Two sessions
targeted identifying and managing sibling emotions with problem-solving around
challenging situations. One session focused on balancing siblings' individual
needs. The final session provided a review and graduation ceremony.
Nine groups containing an average of six siblings were led by two doctoral
level trainees in psychology or psychiatry. Activities of the sibling group
alternated between explicitly focused "main events" and other more
social-recreational activities that addressed the goals of enhancing sibling
connectedness more implicitly. Some sibling group activities resembled
elements of existing sibling curricula
(Lobato, 1990;
Meyer & Vadasy, 1994);
most activities were original.
Collateral parent groups consisted of 5-6 parents led by a licensed clinical psychologist. The parent group "main events" involved a mix of didactic presentation, meeting with adult siblings of a child with a disability or illness, and group discussion on topics that paralleled those of the sibling group. Additionally, activities of the sibling and parent groups were integrated to enhance mutual understanding and perspective taking. Siblings created a videotape about their experiences that parents reviewed, and sibling and parent groups joined for portions of four of the sessions to visit the hospital library, read books, engage in interactive exercises and games, and to participate in the graduation.
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Results |
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All enrolled families completed treatment. Attendance rates for siblings and parents were high with 75% of the families attending all six sessions. Parent ratings of satisfaction with the program were high (average 4.5 on a scale from 1-5). All 54 of the siblings completed pre-post data, whereas parents of 9 of the siblings did not have complete pre-post parent data. There were no significant group differences in the demographic characteristics of the families with and without complete pre-post parent data.
Pre-Post Evaluation
All dependent variables completed at pretreatment were normally
distributed. Repeated measures analyses of variance (ANOVA) revealed main
effects for time (pretreatment, posttreatment) on the dependent measures of
sibling knowledge, sibling adjustment, sibling connectedness, and sibling
behavioral functioning. As displayed in
Table I, siblings' ability to
accurately name, F(1, 53) = 10.26, p < .01, and explain,
F(1, 53) = 22.98, p < .01, the child's disorder increased
from pre- to posttreatment. Scores on the SPQ Negative Adjustment scale
(sibling report) decreased from pre- to posttreatment, F(1, 53) =
4.58, p < .05, indicating a reduction in symptoms of negative
adjustment. Results for the SPQ Negative Adjustment (parent report) were not
significant, F(1, 43) = 2.60, p < .11. Both siblings',
F(1, 53) = 44.20, p < .01, and parents', F(1,
43) = 32.90, p < .01, reports of sibling connectedness increased
from pre- to posttreatment. Finally, there were decreases in internalizing,
F(1, 39) = 9.41, p < .01, and externalizing,
F(1, 39) = 13.40, p < .01, T scores on the CBCL
from pre- to posttreatment, indicating statistically significant reductions in
parent report of global behavior problems.
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Diagnostic Differences. Repeated measures ANOVA were conducted to assess the effects of the type of the brother/sisters' disorder and time on all outcome measures. These analyses compared siblings of children with a physical disability, autism spectrum disorder, mental retardation, medical disorder, or psychiatric disorder. For siblings' ability to explain the disorder, there was a main effect of the child's disorder, F(4, 49) = 4.72, p < .01, and an interaction between time and the child's disorder, F(4, 49) = 4.72, p < .01. Siblings of children with autism spectrum disorders, psychiatric disorders, and mental retardation provided less accurate explanations of the disorders, and their levels of accuracy increased more from pre- to posttreatment, in comparison to siblings of children with physical disabilities or medical disorders.
Gender Differences. Repeated measures ANOVAs were conducted to assess main effects of sibling gender and time on all outcome measures. For siblings' ability to name the disorder, there was a main effect of sibling gender, F(1, 52) = 5.97, p < .05, and an interaction effect, F(1, 52) = 4.55, p < .05, between time and sibling gender. Girls were more accurate in naming the disorder than boys; boys' accuracy in naming the disorder increased more than girls' from pre- to posttreatment.
Three-Month Follow-Up
Repeated measures ANOVAs were conducted to assess the main effects of time,
with pairwise comparisons among the means for pre-, post-, and 3-months
posttreatment, on the outcome measures completed by the 20 families who
participated in the 3-month follow-up (see
Table I). There was a main
effect of time for siblings' ability to accurately explain the child's
condition, F(2, 18) = 3.60, p < .05. The accuracy scores
increased from pre- to posttreatment (p < .05) but decreased from
posttreatment to 3-month follow-up (p < .05). As reported by
siblings, F(2, 18) = 9.20, p < .01, and parents,
F (2, 14) = 7.39, p < .01, sibling connectedness
increased significantly from pre- to posttreatment (p < .01) and
from pre- to 3-months posttreatment (p < .01). On the CBCL, there
was a main effect of time for the internalizing, F(2, 14) = 4.20,
p < .05, and externalizing, F(2, 14) = 5.51, p
< .05, T scores. Externalizing T scores decreased at
posttreatment (p < .05) and at 3 months posttreatment (p
< .05). Internalizing T scores decreased significantly from pre-
to posttreatment (p < .05) but not from pre- to 3 months
posttreatment (p < .09).
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Discussion |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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By intervening jointly with siblings and parents, the SibLink model emphasized the family as a primary context for sibling understanding and adjustment to a child's illness or disability. This introduces a shift from previous sibling group interventions that have targeted siblings only as individuals with needs for information and peer support (e.g., Lobato, 1990
;
Meyer & Vadasy, 1994).
Compared to baseline, measures of sibling knowledge of the child's disorder
and sibling connectedness increased, while sibling reports of negative
adjustment to the disorder and parent reports of sibling behavioral problems
decreased significantly after treatment for both boys and girls and across
types of diagnostic conditions. There was no evidence that increasing
siblings' knowledge and discussion of disability-related experiences was
associated with any negative emotional or behavioral outcome, at least when
these occurred within an atmosphere of parent support. It is possible that
increasing information and exposure to disability-related topics might have a
different effect on the emotional and behavioral functioning of siblings
within families whose values and motivations are less consistent with these
goals. Most parents in the sample (52.5%) reported that they had volunteered
for the program because they wanted their well children to be able to meet and
talk to peers with similar family circumstances. Thus, this sample may have
been biased in favor of families who could support the program goals.
Overall, siblings who participated in the program appeared representative
of siblings of children with CI/DD described in the literature
(Stoneman & Berman, 1993),
insofar as mean scores for parents' reports of siblings' global behavioral
functioning were not significantly elevated. The parent component of the
program provided information and discussion regarding typical and atypical
sibling behavior and relationships. It is possible that the reductions in
parent-reported behavioral problems reflected changes in parent perspectives
on sibling behavior, actual changes in sibling behavior, or a combination of
both. While the decreases in CBCL T scores were statistically
significant, the scores were well within normal limits both before and after
treatment.
The SibLink program was designed to deal with sibling challenges that cut across types of diagnostic conditions. Siblings were grouped together without regard to the type of diagnosis of the child. While treatment effects were similarly positive across diagnostic conditions, there were some interesting main effects and interactions associated with diagnosis. Specifically, in comparison to siblings of children with physical disabilities or medical disorders, siblings of children with autism spectrum disorder, mental retardation, and psychiatric disorder expressed less knowledge of these conditions at pre-treatment and their knowledge increased more from pre- to posttreatment. We expect that the less visible, less specific, and perhaps more stigmatizing nature of these three diagnoses partially accounts for the lesser accuracy of siblings' knowledge prior to treatment.
The finding that results regarding negative adjustment to CI/DD differed as
reported by siblings and parents on the SPQ raises questions regarding the
psychometric properties of the instrument as well as the sensitivity of
parents as informants regarding siblings' specific adjustment to CI/DD. In
general, the little that is known about the concordance between parent and
sibling reports of sibling adjustment to CI/DD suggests that parents and
siblings often differ in their reports of sibling symptoms
(Guite, Lobato, Kao, & Plante,
2002). These issues of sibling-parent discordance as well as the
psychometric properties of the SPQ as a measure of sibling adjustment require
further investigation.
Certain limitations of this study are important to highlight. Most important, there was no control group against which to compare the measured pre-post changes. Second, despite the emphasis on the family aspect of the intervention, this project was not designed to test the relative or synergistic effects of the sibling and parent components. Finally, the demographic profile of this sample was skewed toward white, middle-class, two-parent families, which limits the generalizability of the findings. The results of this study, however, do provide support for future research utilizing randomized controls and a more diverse participant sample to evaluate the effects of integrated sibling-parent group interventions on sibling adaptation to chronic illness and developmental disability.
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Acknowledgments |
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Portions of this project were supported by grant HPHC 2.3.97 from the Harvard Pilgrim Research Foundation. We thank Drs. Lori Myren-Manbeck and Lori McKinsey for their assistance.
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Notes |
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1 Secondary measures of sibling self-perception and sibling dyadic relationship quality also were collected pre- and posttreatment to monitor potential negative side effects of group participation, of which there were none. Details regarding these analyses are available from the authors on request.
Received June 19, 2001; revision received February 1, 2002; accepted April 5, 2002
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