Adult Sibling Relationships With Brothers and Sisters With Severe Disabilities

Abstract

The purpose of this qualitative study was to examine perceptions of adult sibling relationships with a brother or sister with severe disabilities and the contexts affecting the relationships. Adult siblings without disabilities (N = 79) from 19 to 72 years of age completed an online survey with four open-ended questions about their relationship with their brother or sister with intellectual and developmental disabilities (IDD) and extensive or pervasive support needs. Inductive analysis yielded findings related to perceptions of the sibling relationship and contexts that influence the sibling relationship. Over half of the relationships were described as being close.The emotional impact of the relationships included feelings of guilt and joy, as well as frustration and stress that were often related to current caregiving and future planning responsibilities. The contextual factors influencing relationship development included several characteristics of their brother or sister with IDD related to his or her disability, as well as sibling proximity.Implications for research and practice related to sibling relationships are provided for professionals, families, and the siblings themselves.

“I love my sister, but sometimes I don't”: A qualitative study into the experiences of siblings of a child with profound intellectual and multiple disabilities

“…In this study, the main focus was on the personal experiences of young siblings (primary school age). Although adult relationships between siblings with and without severe disabilities are still described as close in more than half of the cases in the study by Rossetti and Hall (2015), it is unknown if the experiences with having a sibling with severe disabilities are stable or will change over time. It would be interesting for future research to follow these children longitudinally and interview them again as adolescents and adults, to see how their experiences evolve over time.…”

Patterns of Adult Sibling Role Involvement with Brothers and Sisters with Intellectual and Developmental Disabilities

“…Increased support needs, as manifested by social, communication, and behavioral challenges, were frequently cited by adult siblings as perceived barriers to closer sibling relationships (Rossetti & Hall, 2015). Past research suggests that siblings with brothers or sisters with autism spectrum disorder (ASD) may have lesser relationship quality than siblings of brothers or sisters with Down syndrome (Hodapp & Urbano, 2007;Orsmond & Seltzer, 2007;Pollard, Barry, Freedman, & Kotchick, 2013).…”

The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities

“…Communication skills and supports were important to sustain and strengthen the relationships between siblings, especially when they lived far away and did not see one another often. The siblings described that many of their brothers and sisters with severe IDD had difficulty in communi- (Rossetti & Hall, 2015).…”