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ToolsWadnerkar Kamble, Meghana, Dawe, Jen and Bunning, Karen (2025) 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, 38 (5). ISSN 1360-2322
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Abstract
Background: There is limited evidence exploring sibling's perspective in Prader-Willi syndrome research. Objectives: To investigate the experiences and support needs of the siblings of individuals with Prader-Willi syndrome. Methods: This 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. Results: Five 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.
| Item Type: | Article |
|---|---|
| Additional Information: | Data Availability Statement: The data that support the findings of this study are available from the corresponding author upon reasonable request. Funding information: This work was supported by Prader-Willi Syndrome Association UK. |
| Uncontrolled Keywords: | prader‐willi syndrome (pws),experiences,family,parents,siblings,support,education,developmental and educational psychology ,/dk/atira/pure/subjectarea/asjc/3300/3304 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > School of Health Sciences |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Groups > Rehabilitation Faculty of Medicine and Health Sciences > Research Centres > Mental Health and Social Care (fka Lifespan Health) |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 24 Sep 2025 10:30 |
| Last Modified: | 30 Sep 2025 08:30 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/100453 |
| DOI: | 10.1111/jar.70122 |
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