“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

BackgroundIndividuals 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.

The Emotional Impact of a Cancer Diagnosis: A Qualitative Study of Adolescent and Young Adult Experience

“…AYAs aged 15 to 39 have in common the fact that they are undergoing crucial developmental changes. The shock and uncertainty of a cancer diagnosis cause a ripple effect across most areas of life-biographical disruption [4,7,13,14]-to a larger extent than for older adults with more established social contexts [7,13,14]. This encompasses a wide range of important psychosocial domains such as their relationships with family and friends, their sexual development, their vocational and educational trajectories, and their physical and emotional wellbeing [15].…”

“…Much has been written and put into practice concerning advances in young people's physical treatment and wellbeing, with the rates of survivorship at 5 years post-treatment increasing steadily over the last decade, now approaching 90% depending on the diagnosis [18]. However, the increased length of survivorship does not account for long-term impacts on quality of life and emotional wellbeing [7,8,13,14].…”