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ToolsWadnerkar Kamble, Meghana, Dawe, Jen and Bunning, Karen (2025) Experiences and support needs of siblings and parents of individuals with Prader-Willi Syndrome: An integrative systematic review. Journal of Applied Research in Intellectual Disabilities, 39 (1). ISSN 1360-2322
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Abstract
Background: Prader-Willi syndrome is a complex neurogenetic condition. Recognised to affect the entire family, little is known of the sibling experience. Objectives: Review the experiences and support needs of siblings of people with Prader-Willi syndrome. Methods: Eight databases, registers and grey literature were searched covering October 2000 - May 2024 (PROSPERO, 2022). Search terms were based on siblings, and their experiences of sibling who has Prader-Willi syndrome. Quality appraisal deployed the Mixed Methods Appraisal Tool. Qualitative findings were assessed using thematic analysis. Quantitative results were summarised and integrated using narrative synthesis. Results: Out of 7,588 results, seven studies were selected. Quantitative reports primarily highlighted negative psychological effects, while qualitative reports concentrated on family relations. Narrative synthesis identified psychological impact, influence on family relationships, and the effect of familial characteristics. Conclusions & Implications: Sibling experiences are shaped by family context. The need for family-centred approach in research and practice is advocated.
| 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: This work was supported by Prader-Willi Syndrome Association UK. |
| Uncontrolled Keywords: | prader-willi syndrome (pws),siblings,parents,family,experiences,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: | 25 Nov 2025 17:30 |
| Last Modified: | 12 Jan 2026 11:30 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/101103 |
| DOI: | 10.1111/jar.70171 |
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