ArticlePediatric blood & cancer2023
"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.
Article in Pediatric blood & cancer, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Current status of and factors influencing advance care planning participation among adolescents and young adults with cancer: a mixed-methods systematic review.BMC palliative care · 2026Pooled it
- Developing and Testing Electronic Versions of the Advance QoL Tools for Collecting Self-Reports of Quality of Life in Children and Adolescents With Advanced Cancer.Scandinavian journal of caring sciences · 2026Article
- Perspectives of Adolescents and Young Adults, Caregivers, and Health Care Providers on Regional Cancer Care: Qualitative Study.JMIR cancer · 2026Article
- Criteria for unmet need in paediatric populations and their families: a literature-based case study in haematological malignancies in upper-middle and high-income countries.Frontiers in pediatrics · 2026Review
- Child and Adolescent Cancer Communication Preferences for Treatment Decision Making: A Meta-Synthesis.Pediatric blood & cancer · 2025Review
- Barriers to timely transitions to comfort care in cancer patients: a review.Annals of medicine and surgery (2012) · 2025Review
- Autonomy in adolescents in palliative care and its biopsychosocial impact: A systematic review.Palliative care and social practice · 2025Review
- Social support resources in adolescents and young adults with advanced cancer: a qualitative analysis.BMC palliative care · 2024Article
- The Emotional Impact of a Cancer Diagnosis: A Qualitative Study of Adolescent and Young Adult Experience.Cancers · 2024Article
- The End-of-Life Wishes and Preferences of Adolescents with Cancer: A Scoping Review.Palliative medicine reportsReview
Corrections and comments
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Authors and funding
6 authors.
Funding
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. PROCEDURE: We 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.
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