“The AYA Director”: a synthesizing concept to understand psychosocial experiences of adolescents and young adults with cancer
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BACKGROUND: Adolescents and young adults with cancer face distinct psychosocial challenges because of the multiple developmental tasks associated with their age. Research on psychosocial care, directed to the unique needs and demands of this population, is limited. OBJECTIVE: The aim of this study was to describe the psychosocial experiences of adolescents and young adults with cancer to further the understanding of the meanings they attribute to their experiences. INTERVENTION/METHODS: This study used a qualitative design in which individual semistructured interviews were conducted with 23 participants aged 15 to 25 years. RESULTS: Physical consequences of the disease and its treatment, loss of independence, and being alone were significant challenges. Major coping strategies of the participants were to avoid the possible threats to life and maintain a positive attitude and normal life. Participants were "directors" who took control in order to manage their illness, maintain a sense of control, and master their lives to the fullest extent possible. CONCLUSIONS: The concept of the "AYA (adolescent and young adult) director" provides insight for healthcare professionals to understand how adolescents and young adults experience cancer. IMPLICATIONS FOR PRACTICE: Throughout the cancer experience, participants wanted to be treated as individuals with specific needs and preferences. They preferred circumstances they are accustomed to; some found it difficult to accept restrictions imposed by the hospital. Adolescents and young adults with cancer want to be involved in the way healthcare professionals communicate with them and the information they are provided.
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Research identifying the specific psychological problems and needs experienced by young people diagnosed with cancer during adolescence and evidence-based cognitive-behavioural models for treating anxiety and depression guided development of the programme.
“Research identifying the specific psychological problems and needs experienced by young people diagnosed with cancer during adolescence30–38 and evidence-based cognitive–behavioural models for treating anxiety and depression58–66 guided development of the programme.”
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- Authors
- Belpame, N., Kars, M. C., Beeckman, D., Decoene, E., Quaghebeur, M., Van Hecke, A., & Verhaeghe, S.
- Affiliations
- Ghent University Hospital (BE)
- Corresponding author
- Belpame, Nathalie
- Venue
- Cancer Nursing
- Published
- 2016-07
- Volume
- 39
- Issue
- 4
- Pages
- 292-302
- ISSN
- 0162-220X (ISSN-L)
- 1538-9804
- OpenAlex
- W1828608023
- Cited by
- 66
- References
- 19
- Citations by year
- 2026: 10 · 2025: 9 · 2024: 6 · 2023: 5 · 2022: 16 · 2021: 6 · 2020: 3 · 2019: 3 · 2018: 3 · 2017: 5
- FWCI
- 2.65
- Type
- journal article
- Language
- en
- Open access
- green
- dspace.library.uu.nl
- Licence
- other-oa
- Locations
- Cancer Nursing (publishedVersion)
- PubMed (publishedVersion)
- Ghent University Academic Bibliography (Ghent University) (submittedVersion)
- Utrecht University Repository (Utrecht University) (submittedVersion, other-oa)
- Utrecht University Repository (Utrecht University) (submittedVersion)
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Keywords
- adolescent and young adult cancer, psychosocial experiences, coping strategies, perceived control, loss of independence, being alone, patient-provider communication, patient preferences
- MeSH terms
- Adaptation, Psychological, Adolescent, Female, Humans, Life Change Events, Male, Neoplasms, Quality of Life, Social Support, Stress, Psychological, Survivors, Qualitative Research, Young Adult
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