Bridging Disciplinary Boundaries (January 11 - 14, 2007)

Purpose: A family-centered approach to research and practice in the context of childhood chronic health conditions is widely embraced as the ideal model.  Yet, little is known about how healthy siblings experience and integrate the presence of a chronic condition into their own lives.  The purpose of this qualitative study, part of a larger mixed methods investigation testing a model of adjustment for siblings of youth with spina bifida, was to develop a richer understanding of the unique sibling risk and resilience experiences.

Methods: A convenience sample of 224 adolescent siblings of youth with spina bifida was recruited through the Spina Bifida Association of America and three geographically diverse spina bifida clinic sites.  Participants responded to an open-ended question, a component of a self-report survey, exploring the challenges and opportunities engendered by the spina bifida experience.  The transcribed data were independently reviewed by three health professionals across disciplines (social work, nursing) and content analysis was performed to examine the responses for common domains, themes, and subthemes.  Decisions about the development and collapsing of domains, themes and sub-themes were reached by consensus and tracked in a methodological journal.  To assess for representation of the thematic results across participants, each excerpt of raw data was tagged with information about developmental stage (early adolescence, 11-12 years of age; middle, 13-15 years; or late, 16-18 years), gender, and birth order.   An outside auditor tracked the process of reaching the final domains, themes, and sub-themes from the initial transcripts. 

Results: Nearly 70% of adolescents participating in the larger study (N = 155, 69.2%) responded in the open-ended section.  Analysis revealed five major domains and twenty-one themes capturing the lived experience of siblings: 1) The Influence of Spina Bifida in the Lives of Siblings, (2) The Emotional Climate of Siblings, (3) Making Meaning of the Spina Bifida Experience, (4) Qualities of the Siblings' Relationships, and (5) Acknowledging the Sibling Experience.  A pervasive presence of spina bifida was depicted, manifest in health and financial concerns and restrictions on social life, but siblings described both challenges and rewards of their experiences.  The journey toward acceptance of spina bifida was one marked by intense, and at times conflicted, emotions.  Participants in early adolescence struggled most with competing feelings of jealousy, embarrassment, protection, and empathy. Several resources to support the siblings were acknowledged, including cohesive family relations, warmth and admiration in the sibling relationship, spirituality, and growth opportunities such as increased maturity and respect for diversity.

Implication for Practice:  Social workers may advance family-centered care by providing resources to assist siblings in areas of concern and offering a safe environment for siblings to process their range of emotions.  These data underscore the importance of interventions that promote open communication within the family, strengthen sibling bonds, and help siblings to recognize and celebrate the rewards of living with a brother or sister with spina bifida.  Increased understanding of the inner world and life experiences of siblings is one step towards realizing family-centered care in the context of spina bifida.