(Future) roles in the care of siblings with intellectual disabilities: Experiences and needs of sisters in early adulthood

Background: Siblings often maintain close relationships with their siblings who have intellectual disabilities, though research on the experiences of siblings in early adulthood who have siblings living in residential care is limited. This study explored their roles, experiences, and needs.

Method: A focus group was held with eight sisters. Data were analysed using reflexive thematic analysis.

Results: Four themes were identified: (i) I want to be (seen as) a sister, (ii) My role within the family in caring for my sibling, (iii) Having a sibling with intellectual disabilities shapes me and my life, and (iv) I am not able do this alone.

Conclusion: The findings underscore the importance of recognising siblings’ needs from an early age, considering family dynamics and involving the whole family in preparing for (future) caregiving roles, offering peer support programs, supporting siblings in balancing care with personal life, and raising awareness about the role of siblings-in-law.