'The overall quality of my life as a sibling is all right, but of course, it could always be better'. Quality of life of siblings of children with intellectual disability: the siblings' perspectives.
Ask siblings directly—nine themes like ‘mutual understanding’ and ‘private time’ capture their unique quality-of-life lens, distinct from parent views.
01Research in Context
What this study did
Researchers sat down with brothers and sisters of kids with intellectual disability.
They asked open questions like, “What makes life good for you?”
From the talks they pulled nine themes the kids kept bringing up.
What they found
Siblings described life through nine lenses.
Big ones were “mutual understanding,” “time alone,” and “feeling safe to share worries.”
These ideas did not match the lists parents usually give.
How this fits with other research
Byra et al. (2025) later asked 103 adult siblings the same kind of questions.
They found grown-ups still lean on “relationship quality” to judge life satisfaction, proving the nine themes hold past childhood.
Branford (1997) had offered six expert-made QoL boxes; Tavassoli et al. (2012) showed kids draw their own, wider boxes.
Hilton et al. (2010) saw behavior problems, not ID itself, hurt siblings most.
The 2012 themes echo that: “less conflict” is baked into the nine domains.
Why it matters
Stop guessing what siblings need.
Use the nine kid-named themes to guide interviews, goal setting, and respite plans.
When you map services to “private time” or “mutual understanding,” you speak their language, not yours.
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02At a glance
03Original abstract
BACKGROUND: The concept of family quality of life is becoming increasingly important in family support programmes. This concept describes the quality of life of all family members and the family system as a whole, but only the opinion of the parents has been included. The opinion of the siblings has been incorporated in the opinions of the parents, although research has shown that there is discordance between parents' and siblings' reports. The principal goal of this study is to investigate how young siblings of children with intellectual disability define their quality of life as a sibling. METHOD: As we were more concerned with understanding the experience of being a sibling from the siblings' own frame of reference, we opted for a qualitative research design and more specifically used in-depth, phenomenology-based interviews. Data were sorted by means of a process of continuously comparing the codes according to the principles of grounded theory. RESULTS: Siblings described the following nine domains as domains of sibling quality of life: joint activities, mutual understanding, private time, acceptance, forbearance, trust in well-being, exchanging experiences, social support and dealing with the outside world. CONCLUSIONS: This study shows not only that siblings can define their quality of life, but also that this definition of sibling quality of life differs from the family quality of life concept. Therefore, it may be not only a valuable addition to the family quality of life concept but also an appropriate concept to describe siblings' experience.
Journal of intellectual disability research : JIDR, 2012 · doi:10.1111/j.1365-2788.2011.01393.x