(111) Social-Emotional Well-Being of Siblings of Children With Special Healthcare Needs: Perspectives

Introduction: As medical technologies continue to improve, the living population of children with special healthcare needs continues to increase. Previous studies have detailed the social and emotional effects of caring for a child with special healthcare needs from the parental perspective, however little is known of the effect on siblings. This study seeks to better understand these unique relationships.

Methods: Telephone interviews with 40 subjects (20 subjects aged 12-17 years, and 20 subjects aged 18-25 years) using standardized questionnaires regarding their lived experiences growing up in a household with a sibling who has special healthcare needs. Interviews were then transcribed and analyzed for themes.

Results: Subjects provided several themes for analysis. Adult subjects (aged 18-25 years) were more likely to note perceived increase in medical/social isolation and/or feelings of emotional neglect from parents. Pediatric subjects (aged 12-17 years) were more likely to state that their future career aspirations were impacted by living with a sibling with special healthcare needs. Pediatric subjects were also less likely to perceive social/emotional isolation or feelings of neglect in regards to living with a sibling with special healthcare needs. Adult subjects were more often interviewed alone, while pediatric subjects often had parent(s) or guardian(s) present for interview. Both adult and pediatric subjects noted changes in household routines when their sibling with special healthcare needs was admitted to the hospital.

Conclusions: Those living in households with children with special healthcare needs appear to perceive varying degrees of social/emotional isolation, often dependent on age. These healthy subjects appear to find their relationships with their siblings with special healthcare needs impactful, even to the point of influencing future career aspirations. Further study is warranted to ascertain best practices to provide psychosocial supports to these healthy children and adults as they navigate their sibling relationships.