ArticleJournal of applied research in intellectual disabilities : JARID2025
Experiences and Support Needs of Siblings of Individuals With Prader-Willi Syndrome- Findings From a Two-Stage Qualitative Study.
Article in Journal of applied research in intellectual disabilities : JARID, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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Who cites it
2 citing papers in PubMed.
- Lived Experiences of Teens and Adults in North America Who Grew Up With a Sibling Diagnosed With Prader Willi Syndrome.Journal of applied research in intellectual disabilities : JARID · 2026Article
- Experiences and Support Needs of Siblings of Individuals With Prader-Willi Syndrome- Findings From a Two-Stage Qualitative Study.Journal of applied research in intellectual disabilities : JARID · 2025Article
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Authors and funding
3 authors.
Funding
Abstract
backgroundThere is limited evidence exploring sibling's perspective in Prader-Willi syndrome research.
objectivesTo investigate the experiences and support needs of the siblings of individuals with Prader-Willi syndrome.
methodsThis two-stage qualitative study involved siblings aged 11 years onwards (n = 11) and parents (n = 8). Stage 1 utilised multiple age-specific focus groups and paired interviews. Data were analysed through integrated discourse and thematic analysis. Stage 2 included consensus meetings utilising the Nominal Group Technique.
resultsFive major themes emerged during Stage 1: family and relationships, food practices, shared understanding, adjustment and advocacy, and support needs. The findings revealed some commonalities in the siblings' discourse, although their experiences varied based on their age. Parents were aware of these differences but had a different focus. CONCLUSIONS AND IMPLICATIONS: Sibling's experiences show a developmental trajectory and could explain variable parental perspectives. A lifespan and family-focused view could help tailor support systems.
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