Objective: To investigate the effects of an intervention for siblings of children with chronic illness (diabetes, developmental disability, spina bifida, cystic fibrosis, cancer). Design: Using a randomized, three-group, repeated measures design, the intervention was provided, first, to allow siblings some respite from a chronically stressful home situation, enrich the siblings' experiences with organized social activities and peer interactions, promote self-esteem and positive mood, and enable siblings to participate in nurse-guided, structured, educational and peer support group sessions that allowed clarification and sharing of knowledge, questions, concerns, and coping skills related to the brother/sister's illness or disability; and second, to maintain gains over time, enhance parental and family awareness of sibling needs, and lessen siblings' perceived social isolation and loss of parental social support. One group of siblings (TG1) received the full intervention at a residential camp, followed by two "booster" sessions. Treatment group 2 (partial, TG2) only attended camp, without the above intervention. The control group (CG) attended camp upon completion of all measurement time points. The baseline and post-intervention phases documented six outcomes: the siblings' levels of knowledge about illness, attitude toward or perception of the illness, social support, self-esteem, mood, and behavior problems. Also documented as covariates were factors in the family and the caregiving environment (age grouping of the well sibling, family SES, family cohesion, maternal mood). The variables were measured at four time points post-intervention: Immediately after, 4 months after, 9 months after, and 12 months after. Sample: 252 siblings and parents completed the study at 12 months-79, 71, and102 in TG1, TG2, and CG, respectively; 14% attrition rate in all 3 groups. Findings: Panel analysis examined the six outcomes (1260 observations), adjusted for covariates, using 6 estimating equations, one for each outcome. Results showed that, compared to baseline: (a) The full treatment group (TG1) showed statistically significant improvements in all 6 outcome measures at almost all 4 periods of post-intervention observation. (b) The partial treatment group (camp only, TG2) showed significant, consistent improvements over time in 3 outcomes (social support, self-esteem, and attitude). (c) The control group (CG) showed improvement over time in 2 outcomes (social support and attitude). Conclusions: Up to one year post-intervention, the full treatment sibling group showed significant, consistent improvements over baseline in all 6 outcomes, as compared to the partial treatment group, and the control group. As hypothesized, the outcome improvement pattern was in the direction of: TG1 > TG2 > CG. Implications: Reports indicate that up to 26% of siblings of children with chronic illness develop mental health or behavior problems (Barbarin et al., 1995). Other studies have suggested that as many as 29% of U.S. children suffer from some moderate to severe chronic illness (Newacheck & Taylor, 1992). If these numbers are accurate, they imply that mental health or behavior problems associated with being a sibling of a chronically ill child are quite prevalent. Perhaps as many as 4-6% of all American children suffer from such problems.
Acknowledgment: The study was funded in 1998-2001 through a grant (1RO1NR04711) awarded to the PI (Phoebe Dauz Williams, RN, PhD, FAAN) by the National Institutes of Health (NIH), National Institute for Nursing Research (NINR), Bethesda, MD 20892.
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