“I won't get to live my life the way I planned it”: A qualitative analysis of the experiences of adolescents and young adults with advanced cancer

Abstract

AbstractBackgroundIndividuals with advanced cancer face complex challenges, including prognostic uncertainty and evolving goals of care. Despite the unique psychosocial support needs of adolescents and young adults (AYAs), few studies have specifically examined AYA perspectives of and experiences with advanced cancer. The objective of this study was to describe the experience, needs, and perspectives of pediatric AYAs with advanced cancer.ProcedureWe invited English‐speaking AYAs (age 14–25 years) who were receiving treatment for advanced cancer at our single tertiary pediatric cancer center to participate in semi‐structured interviews. We used directed content analysis for codebook development and then applied in‐depth thematic network analysis to describe their perspectives and experiences with advanced cancer.ResultsA total of 32 AYAs (86% of approached) completed interviews. A slight majority were male (59%) and non‐Hispanic White (56%). Most were diagnosed with leukemia/lymphoma, had recurrent disease (84%), and were a mean 53 months from initial diagnosis. Organizing themes of “not being able to beat this,” “not wanting to miss out,” and “living each day” generated the global theme “do I have a future?” “Making tough medical decisions,” “adjusting life/plans/perspectives,” and “decisions about dying” were organized into the global theme “those decisions … were really hard.” “Feeling like there is no one to talk to,” “being away from family and friends,” and “feeling like a burden” generated the global theme “I felt very alone.”ConclusionsPediatric AYAs with advanced cancer describe unique challenges. Psychological support interventions are needed to empower AYAs to navigate difficult decisions and to cope with isolation.