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

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. Search terms were based on siblings and their experiences of a 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 7588 results, seven studies were selected. Quantitative reports primarily highlighted negative psychological effects, whilst qualitative reports concentrated on family relations. Narrative synthesis identified psychological impact, influence on family relationships, and the effect of familial characteristics. CONCLUSIONS AND IMPLICATIONS: Sibling experiences are shaped by family context. The need for family-centred approach in research and practise is advocated.