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

Background: Prader-Willi syndrome (PWS) is a complex disorder with severe behavioural symptoms that affects the entire family. Relatively little research has focused on the lived experiences of siblings growing up in this unique family environment.

Method: 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.

Results: 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.

Conclusions: 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.