‘It's different, but it's the same’: perspectives of young adults with siblings with intellectual disabilities in residential care

Abstract

Accessible summary• Siblings often play important roles in the lives of people with intellectual disabilities.• This study suggests that young adults who have siblings in residential care can feel isolated in their experience.• Adolescence appears to be a turning point and a time when siblings become aware of future caretaking responsibilities.• There is a need for support for siblings of children and adults with intellectual disabilities who live in residential care. AbstractBackground: Siblings often play significant roles in the lives of people with intellectual disabilities. This study aimed to give voice to young adults whose siblings have an intellectual disability and are in residential care. Materials and Methods: Six participants were interviewed, with interpretative phenomenological analysis methodology employed. Results: Emergent themes included family and sibling relationships and concerns for the future. However, ambivalence, in terms of conflicting feelings within participants themselves, was striking. Dissonances within narratives included identifying as 'one family' whilst living apart, experiencing guilt while being supportive of the residential placement, and emphasising the normality of the sibling experience whilst also feeling different and isolated. Conclusion: These findings reflect the particular complexity of sibling relationships when the person with an intellectual disability lives in residential care. There is a need to understand more about the perspectives of siblings, and the influence that residential care may have upon these.

“I Would Like to Have a Normal Brother but I’m Happy With the Brother That I Have”: A Pilot Study About Intellectual Disabilities and Family Quality of Life From the Perspective of Siblings

“…When a child with ID is born into a family, siblings share the same kind of feelings as parents, such as the happiness arising from the new birth, but also the grief, pain, and challenges that this child may bring (Seligman & Darling, 2009). Throughout the life cycle, siblings do not feel that their families are different from other families without persons with ID, and they see their relationship with the person with ID as normal (Jacobs & MacMahon, 2016). Nevertheless, they consider the experience of having a sibling with ID a strong and central element to their lives and understand the distinctiveness of their situation and how it has influenced them (Jacobs & MacMahon, 2016).…”

“…Adolescence and young adulthood are important developmental stages both for the individual with ID and for their siblings, as well as for the development of their future relationship (Jacobs & MacMahon, 2016). Therefore, it is important to clarify the concept of sibling's QoL both in adolescence as well as in adulthood as the issues that can contribute to a good QoL may vary according to the life cycle stage (Moyson & Roeyers, 2012).…”

The Family and Disability in Ghana: Highlighting Gaps in Achieving Social Inclusion

“…This contributes to poor social networks or weak bonds between the family and the child (Lim, 2017). This lead to situations where siblings are unable to support each other or grow up together and develop a strong relationship (Jacobs & MacMahon, 2017). Evidently, they may spend the rest of their lives in residential facilities or end up on the streets and homeless (Nishio et al, 2017).…”

Transition from school to adult services for young people with severe or profound intellectual disability: A systematic review utilizing framework synthesis

“…The experience of “difference” has been highlighted by others (Nind, ; Simmons & Watson, ; Ward et al., ) and can lead to ambiguity for those supporting adults with severe or profound intellectual disability (Bigby, Clement, Mansell, & Beadle‐Brown, ; Dunn, Clare, Holland, & Gunn, ; Hubert, ). Jacobs and MacMahon () found that the views of siblings illustrated this tension between difference and normality, of being both a different family, and being just like any other. It seems as if the experience of “difference” is more prominent in this context compared to the literature on those with mild or moderate intellectual disability, pointing to the need for research to differentiate within the spectrum of intellectual disability (Foley et al., ; Gauthier‐Boudreault, Beaudoin, et al., ).…”