"The absolute dearth of resources": Challenges and unmet support needs for emerging adult siblings of individuals with neurodevelopmental conditions in regional and remote Australia

Abstract

Siblings of individuals with neurodevelopmental conditions have unique experiences and sometimes additional challenges, especially in rural areas where there may be limited access to sibling-specific support services. This mixed-methods study examined the relationships of three known protective factors (resilience, social support, and general family functioning) with the wellbeing of siblings residing in regional and remote areas of Australia. To better understand the factors that shape their wellbeing, we also explored the challenges these siblings experience and their perspectives on unmet needs. We surveyed 93 siblings who were predominantly women (79.6%), with a mean age of 23 (range=16–30). Pearson’s correlations between resilience (r = .68), social support (r = .74), and general family functioning (r = -.55) and measures of wellbeing were strong and significant (p ' .001). A reflexive thematic analysis identified a narrative of sibling perspectives, represented by three themes, which reflected the dearth of resources available in rural areas, the importance of being seen as an individual, and the feelings of pressure, expectation, and invisibility that often accompany the sibling experience. When examining quantitative and qualitative data together, it was observed that being female or non-binary, and poor family functioning were important factors that underpinned many of the expressed challenges and areas of unmet need for siblings. Findings suggest avenues for approaching systemic barriers, ameliorating isolation and stigma, and harnessing interventions focused within rural communities to protect against future clinical needs.