“There’s a lot of unknowns”: a thematic analysis of the experiences of young adults with cancer who died during a psychosocial intervention trial
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Le résumé fourni par la source
BACKGROUND: Young 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. METHODS: During 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. RESULTS: Emergent 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. CONCLUSIONS: YAs 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 REGISTRATION: ClinicalTrials.gov, #NCT04585269, October 14, 2020.
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Le contrôle bibliographique ouvert
DOI retrouvé dans Crossref DOI retrouvé ; titre concordant.
- Titre Crossref
- “There’s a lot of unknowns”: a thematic analysis of the experiences of young adults with cancer who died during a psychosocial intervention trial
- Date Crossref
- 09/04/2025
- Éditeur
- Springer Science and Business Media LLC
- Type
- journal-article
Ce recoupement confirme des métadonnées liées au DOI. Il ne confirme ni la méthode ni les conclusions de l’étude, et il ne compte pas comme une seconde source scientifique indépendante.
Où se fait cette recherche
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The State University of New Jersey Rutgers pays non établi dans la noticeUniversité ou école supérieure
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Moffitt Cancer Center pays non établi dans la noticeÉtablissement de santé
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Rutgers Cancer Institute Department of Pediatrics pays non établi dans la noticeÉtablissement de santé
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Mayo Clinic Department of Psychiatry & Psychology pays non établi dans la noticeÉtablissement de santé
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WinnMed pays non établi dans la noticeOrganisation à but non lucratif
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Golisano Children's Hospital pays non établi dans la noticeÉtablissement de santé
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Memorial Sloan Kettering Cancer Center pays non établi dans la noticeÉtablissement de santé
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Department of Health Outcomes and Behavior pays non établi dans la noticeInstitution
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University of Rochester School Medical Center Golisano Children's Hospital pays non établi dans la noticeUniversité ou école supérieure
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Department of Psychiatry and Behavioral Science pays non établi dans la noticeInstitution
Rutgers — The State University of New Jersey, Moffitt Cancer Center et Department of Pediatrics — Rutgers Cancer Institute, avec 7 autres affiliations.
Une affiliation ne permet pas de déduire la nationalité d’un auteur.