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

## TL;DR

This review explores the experiences and support needs of siblings of individuals with Prader-Willi syndrome, emphasizing the importance of family context.

## Contribution

The study highlights the need for a family-centered approach and identifies gaps in qualitative research on sibling experiences.

## Key findings

- Sibling experiences are influenced by family context and psychological impacts.
- Current evidence lacks qualitative depth and generalizability.
- Future research should include multiple perspectives, including those of individuals with Prader-Willi syndrome.

## Abstract

Prader‐Willi syndrome is a complex neurogenetic condition. Recognised to affect the entire family, little is known of the sibling experience.

Review the experiences and support needs of siblings of people with Prader‐Willi syndrome.

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.

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.

Sibling experiences are shaped by family context. The need for family‐centred approach in research and practise is advocated.

Family context shapes sibling experiences in Prader‐Willi syndrome.Evidence on sibling experiences is limited, lacks qualitative depth, and is currently not widely generalisable.Understanding the family system can have implications for the agency or lack of agency felt by the person with Prader‐Willi syndrome.Future research can use exploratory qualitative design to capture the family's voice and seek multiple perspectives including from the person with Prader‐Willi syndrome.

Family context shapes sibling experiences in Prader‐Willi syndrome.

Evidence on sibling experiences is limited, lacks qualitative depth, and is currently not widely generalisable.

Understanding the family system can have implications for the agency or lack of agency felt by the person with Prader‐Willi syndrome.

Future research can use exploratory qualitative design to capture the family's voice and seek multiple perspectives including from the person with Prader‐Willi syndrome.