Lived Experiences of Teens and Adults Who Grew Up With a Sibling Diagnosed With Prader Willi Syndrome

Summary

The PWS diagnosis impacts every person in the family. It changes family dynamics and relationships as well as every interaction with food. Siblings can be particularly vulnerable to the unavoidable stress related to managing and caring for a person with PWS. They may experience impacts in multiple aspects of their lives, including their relationship with food, emotional well-being, and peer and parental relationships. To examine these issues, FPWR conducted a qualitative study, interviewing siblings of people with PWS to help us better understand their unique perspectives and lived experiences.  

Research Outcomes: Public Summary

Semi-structured interviews were performed with 25 siblings of individuals with PWS from North America. Participants reflected on their experiences including interpersonal relationships, impacts on well-being, coping, and relationship with food.
Using inductive thematic analysis, we identified several themes: (a) emotion and well-being impacts, (b) impacts on their relationship with food, and (c) relational/social issues. Positive aspects of their family experience and impacts on job path were identified. Key coping resources were highlighted.
This study can inform more family-oriented support efforts in PWS care models to include sibling support. The findings suggest sibling support should focus on addressing difficult emotional experiences, problematic eating behaviours, and seeking connection with other siblings with similar experiences.

Research Outcomes: Publications

A Parent's Guide to Supporting Siblings of a Person with Prader-Willi Syndrome.

Lived Experiences of Teens and Adults in North America Who Grew Up With a Sibling Diagnosed With Prader Willi Syndrome. Schwartz L, TurnWald A, Roth M, Strong TV. J Appl Res Intellect Disabil. 2026 May;39(3):e70263. doi: 10.1111/jar.70263. PMID: 42286844; PMCID: PMC13263404.