"There's a lot of unknowns": a thematic analysis of the experiences of young adults with cancer who died during a psychosocial intervention trial.

backgroundYoung adults (YAs) with cancer of any stage face challenges and unmet needs across biopsychosocial domains. YAs who have rapidly declining health trajectories, or who enter end-of-life stage sooner-than-anticipated, merit greater understanding so their providers can prioritize patients' needs and values during this vulnerable period. This analysis sought to explore the lived experiences and priorities of patients whose cancer progressed rapidly, or who entered end-of-life stage unexpectedly, by conducting a thematic analysis on transcripts generated by their participation in a randomized control trial (RCT) designed for YAs with newly diagnosed cancer.

methodsDuring a multisite RCT evaluating the efficacy of Bright IDEAS-YA, a 6-session psychosocial problem-solving intervention for YAs newly diagnosed with cancer, all Bright IDEAS-YA intervention sessions were recorded. Despite RCT eligibility criteria designating that participants should have a life-expectancy of 6 + months, some enrolled participants were unable to continue study participation due to death or rapid health decline. This analysis identified each participant who died during study participation or withdrew due to rapid health decline that had been enrolled into the intervention arm of the Bright IDEAS-YA RCT (n = 12). Individuals completed between 2 and 6 Bright IDEAS-YA sessions, which were transcribed verbatim for analysis (n = 60 transcripts). From December 2022 to March 2023, 10 researchers reviewed all available Bright IDEAS-YA transcripts and inductively co-developed a codebook on emergent transcript themes. Two researchers then co-coded all Bright IDEAS-YA transcripts, establishing a cut-off date of December 31, 2023 for participants eligible for subanalysis, once thematic saturation was determined.

resultsEmergent themes included Cancer and Treatment, Mortality, Social Systems, Emotions, Work/Academics, Mental Health, Spirituality, COVID-19, Meaning Making, and Participation in Bright IDEAS-YA. Only a subset of themes reflected end-of-life challenges.

conclusionsYAs who approached end-of-life or saw unexpectedly fast declines in their healthcare trajectory showed many similarities to YAs outside of end-of-life contexts. Some, but not all, participants reflected on goals and challenges related to end-of-life during Bright IDEAs-YA participation. To ensure YAs are holistically understood, and that their priorities both prior to and during end-of-life are respected by their healthcare teams, it is important that providers collaborate with YA patients and introduce care strategies that elicit patients' values and goals.

trial registrationClinicalTrials.gov, #NCT04585269, October 14, 2020.