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Experiences and Support Needs of Siblings of Individuals With Prader-Willi Syndrome: An Integrative Systematic Review

Meghana Wadnerkar Kamble1, Jen Dawe1, Karen Bunning1

  • 1School of Health Sciences, Faculty of Medicine and Health, University of East Anglia, Norwich, UK.

Journal of Applied Research in Intellectual Disabilities : JARID
|January 11, 2026
PubMed

Insights

Siblings of individuals with Prader-Willi syndrome (PWS) experience psychological effects and altered family dynamics. A family-centered approach is crucial for supporting these siblings.

Area of Science:

  • Neurogenetics
  • Family Studies
  • Psychology

Background:

  • Prader-Willi syndrome (PWS) is a complex neurogenetic disorder impacting the entire family unit.
  • The experiences and support needs of siblings of individuals with PWS are not well understood.

Purpose of the Study:

  • To review the experiences of siblings of people with Prader-Willi syndrome.
  • To identify the support needs of these siblings.

Main Methods:

  • A comprehensive literature search was conducted across eight databases and grey literature (October 2000-May 2024).
  • Search terms focused on siblings and their experiences with a brother or sister who has PWS.
  • Qualitative data were analyzed thematically, and quantitative data were synthesized narratively, with quality appraisal using the Mixed Methods Appraisal Tool.

Main Results:

  • Seven studies were selected from 7588 results.
  • Quantitative findings indicated negative psychological effects in siblings.
  • Qualitative findings emphasized the impact on family relationships, with narrative synthesis highlighting psychological impact, relationship dynamics, and familial characteristics.

Conclusions:

  • Sibling experiences are significantly influenced by the family context.
  • There is a clear need for family-centered approaches in both research and clinical practice concerning Prader-Willi syndrome.
Abstract

Keywords:
Prader‐Willi syndrome (PWS)experiencesfamilyparentssiblings

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