“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

Abstract

The relationships between siblings are the most long-lasting in families. When one of the siblings is a person with intellectual disabilities (ID), this relationship assumes an even more important role since this brother/sister will most likely become the disabled individual’s main caregiver. This pilot study had two aims: to explore the experience as an adolescent or adult sibling of a person with ID and to understand the perceptions of these siblings about quality of life as a sibling and about family quality of life. In-depth interviews were conducted with six siblings. The results showed that the experience of a sibling is positive and the acceptance process is of extreme importance. The domains which, from the sibling perspective, contribute to family quality of life are as follows: Family relationships, Acceptance, Health, Influence of values, Financial well-being, Support from others, and Leisure activities. The implications of these findings for intervention are pointed out.

Well-Being of Families with a Child with Profound Intellectual and Multiple Disabilities

“…Furthermore, these results show that a child with a disability does not negatively affect their family necessarily (Hastings, 2016), even when that child has pervasive support needs, such as a child with PIMD. It also shows that siblings have a positive experience of FQOL as well, in line with the study of Correia and Seabra-Santos (2021), which showed that siblings of a person with an intellectual disability in general have a positive experience of FQOL. However, these results do not imply that families should not receive support or have no need for it.…”

“…Research. Although it is known that the siblings have a unique perspective on FQOL (Correia & Seabra-Santos, 2021;Moyson & Roeyers, 2012), this study is the first to confirm that siblings also score differently on FQOL. For future studies on FQOL, we therefore recommend to include as many members of a family unit as possible, considering the significant differences that were found.…”

“…Moreover, siblings’ perspective on QOL also differs somewhat from FQOL (Moyson & Roeyers, 2012), which means siblings differ from their parents in which aspects they find important for a good FQOL, and how satisfied they are with these aspects. Interviews with siblings of a person with an intellectual disability indeed show that siblings have a unique perspective on which aspects contribute to FQOL (Correia & Seabra-Santos, 2021). For age of the respondent, the same effects were found for the domains of emotional well-being, material well-being, and disability-related support, in that scores for these domains significantly decreased with age.…”

“…Studies that did include both parental perspectives (e.g., Khoury, 2010; Vanderkerken et al, 2018; Wang et al, 2006) found no significant differences in scores between mothers and fathers. Furthermore, siblings have a different perspective than their parents on the impact of their brother or sister’s disability (Guite et al, 2004), and also have a different perspective on what FQOL entails (Correia & Seabra-Santos, 2021; Moyson & Roeyers, 2012), and could therefore score differently on FQOL than parents. However, a study by Vanderkerken et al (2018) appears to be the only study using the Beach Center FQOL Scale that has included siblings.…”

Quality of life of siblings of people with intellectual and developmental disabilities

“…For example, Siblings' extracts illustrate that family interactions can negatively influence their quality of life when considered unfair: causing them feelings of anger and envy. These results are consistent with those from Correia and Seabra-Santos (2021) where Siblings indicated how their brother or sister with disability have a preponderant role in their family life, leading to limitations on the ordinary family life cycle and on family' experiences. For instance, it is important to stress the "role reversal" reported by Siblings.…”