Background
Despite work on the self‐identities of people with intellectual disabilities, research has yet to describe the self‐perceptions of people with Prader‐Willi syndrome (PWS). The perspectives of those with PWS are also important for rapidly evolving clinical trials aimed at treating symptoms of PWS.
Method
Twenty‐one young people with PWS were administered a semi‐structured interview that assessed how they perceive their syndrome and clinical trials. Transcribed interviews were reliably coded using content‐driven, applied thematic analyses.
Results
Five themes emerged: struggles with chronic hunger and food‐seeking that impede goals and relationships; struggles with anxiety and outbursts, schedule changes and school; distancing from PWS; needs for clinical trials that cure PWS, reduce hunger or anxiety, and lead to improved outcomes; and needs for advocacy and awareness of PWS.
Conclusions
Findings shed new light on the self‐perceptions of those with PWS and have important implications for current interventions and future clinical trials.