Examination of an Ecological Model of Adjustment for Adolescent Siblings of Youth with Spina Bifida

While much research has focused on the psychosocial health of youth with spina bifida and their parents, less is known about the sibling experience. This cross-sectional mixed method study tested an ecological model of adjustment for adolescent siblings using self-report surveys. Convenience sampling methods were used to recruit 224 families from the Spina Bifida Association of America and three spina bifida clinic sites. The central hypotheses evaluated whether a set of ecological variables (stress appraisal, satisfaction with family functioning, warmth and conflict in the sibling relationship, and peer support) predicted sibling self-concept, prosocial behavior, and behavior difficulties, after controlling for spina bifida severity, length of time having a brother/sister with spina bifida, and sibling age. A potential moderating influence of sibling gender and birth order was also examined. A qualitative component was included to ascertain whether the variables included in the ecological model captured those concepts reported as salient by the siblings. Hierarchical regression equations tested the central hypotheses. Content analysis was performed on the qualitative data, with journaling and an external auditor used to enhance rigor.The ecological model explained a significant amount of variance in sibling self-concept, prosocial behavior, and behavior difficulties. Significant individual risk and protective factors were observed at several layers of sibling life, and there were divergent predictors of self-concept and behavior. Birth order emerged as an important moderating variable in several regression equations. The qualitative analysis revealed five major domains and twenty-one themes capturing the lived experience of siblings. Their stories reflected overall acceptance for the omnipresence of spina bifida, though ongoing difficulties such as jealousy, embarrassment, and guilt were evident, particularly for those participants in early adolescence. The journey toward acceptance of spina bifida was one marked by intense, and at times conflicted, emotions. Findings from this research suggest family-centered care may be enhanced by clarifying and supporting sibling perception of the impact of spina bifida, promoting a healthy family milieu characterized by communication sharing, growth opportunities, and positive sibling interactions, and encouraging opportunities for peer socialization