“I can control what I do with my daily life”: Occupational experiences of adolescents and young adults with Li-Fraumeni Syndrome

Objective: This qualitative study sought to explore the experiences of adolescents and young adults (AYAs) with Li-Fraumeni Syndrome (LFS), an inherited cancer predisposition syndrome, through an occupational lens. Method: Semi-structured interviews were conducted with 38 AYAs with LFS. Inductive analysis was used to code for themes and patterns related to occupation and well-being. Grounded theory and interpretive descriptive frameworks informed data analysis. Results: Occupational loss was common, but positive shifts in occupation were also reported. Occupations delivered therapeutic value for participants in several ways, including providing positive distraction. Participants reported a desire to maintain normal occupations despite LFS. Conclusion: AYAs with LFS may benefit from a focus on finding positive meaning in chronic illness, exploring shifts in occupation based on health status, and identifying occupations that can provide distraction and emotional relief from the challenging process of lifelong cancer screening and treatment.