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

The review included only seven studies and 673 participants, and the evidence came from self-report and parent-report questionnaires, so it cannot show how common these experiences are. Only two studies reported ethnicity, and the samples were largely Caucasian; participant characteristics were inconsistent across studies. The samples were mostly female and from high-income countries, and all included studies were in English, so findings may not transfer widely. Self-selection bias was likely, because participation was voluntary and people who needed support most may not have been represented. The quantitative studies were too different for a meta-analysis, so the review could not combine the quantitative results into one estimate. It found limited evidence for well-defined sibling interventions, so it cannot tell you what helps siblings. Parents and siblings were not always assessed together within the same family, so some comparisons of parent and sibling perspectives were limited. Positive sibling experiences were under-reported, because most studies focused on negative symptomatology.

This review was supported by Prader-Willi Syndrome Association UK. The authors declared no conflicts of interest.

Do not read the PTSD, anxiety, and burden findings as a diagnosis for every sibling of a person with Prader-Willi syndrome. They came from self-report and parent-report studies across only seven studies, and the review did not find evidence for tested sibling interventions.