"Uncovering the unspoken": a narrative analysis of patients' experiences with testicular cancer.


Journal

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
ISSN: 1433-7339
Titre abrégé: Support Care Cancer
Pays: Germany
ID NLM: 9302957

Informations de publication

Date de publication:
12 Aug 2024
Historique:
received: 21 11 2023
accepted: 27 07 2024
medline: 13 8 2024
pubmed: 13 8 2024
entrez: 12 8 2024
Statut: epublish

Résumé

The aim of this study was to understand the experiences of young men with a diagnosis of testicular cancer (TC) using a narrative approach, with the intention of informing models of care and support in clinical services. TC patients were recruited to participate in one of four focus groups examining their lived experiences from diagnosis. Focus groups were recorded and transcribed and analyzed using a narrative approach. A total of 4 focus groups were held from March to May 2019, involving 21 participants. Participants were currently on treatment (n = 2), < 2 years from treatment completion (n = 7), or > 2 years from treatment completion (n = 12). Two overarching meta-themes were identified: Negotiating Identity (comprising "recovery, repair and control"; "breaking the news"; "threats to fertility and virility"; "multiple masculinities") and Needing to Adjust (comprising "trauma and post-traumatic growth"; "facing vulnerability"; "managing to cope"; "secrecy vs. privacy"). Shared themes relating to environments for support, conversations about cancer, and time stress were also identified. Despite the significant cure rates for testicular cancer, the psychosocial needs of patients diagnosed with TC are paramount and potentially long-lasting. Improved clinical care for these patients includes exploration of both physical and psychosocial concerns over multiple timepoints. Opportunities for peer support and mentorship may be essential to support these vulnerable patients.

Sections du résumé

BACKGROUND BACKGROUND
The aim of this study was to understand the experiences of young men with a diagnosis of testicular cancer (TC) using a narrative approach, with the intention of informing models of care and support in clinical services.
METHODS METHODS
TC patients were recruited to participate in one of four focus groups examining their lived experiences from diagnosis. Focus groups were recorded and transcribed and analyzed using a narrative approach.
RESULTS RESULTS
A total of 4 focus groups were held from March to May 2019, involving 21 participants. Participants were currently on treatment (n = 2), < 2 years from treatment completion (n = 7), or > 2 years from treatment completion (n = 12). Two overarching meta-themes were identified: Negotiating Identity (comprising "recovery, repair and control"; "breaking the news"; "threats to fertility and virility"; "multiple masculinities") and Needing to Adjust (comprising "trauma and post-traumatic growth"; "facing vulnerability"; "managing to cope"; "secrecy vs. privacy"). Shared themes relating to environments for support, conversations about cancer, and time stress were also identified.
CONCLUSIONS CONCLUSIONS
Despite the significant cure rates for testicular cancer, the psychosocial needs of patients diagnosed with TC are paramount and potentially long-lasting. Improved clinical care for these patients includes exploration of both physical and psychosocial concerns over multiple timepoints. Opportunities for peer support and mentorship may be essential to support these vulnerable patients.

Identifiants

pubmed: 39134893
doi: 10.1007/s00520-024-08770-2
pii: 10.1007/s00520-024-08770-2
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

584

Informations de copyright

© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.

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Auteurs

Barry D Bultz (BD)

Department of Oncology, Division of Psychosocial Oncology, Cumming School of Medicine, University of Calgary, Calgary, Canada. bdbultz@ucalgary.ca.
School of Medicine and Public Health, University of Newcastle, Callaghan, NSW, Australia. bdbultz@ucalgary.ca.
Department of Psychosocial Oncology, CancerControl Alberta, Tom Baker Cancer Centre, 2202 2nd Street SW, Calgary, AB, T2S 3C3, Canada. bdbultz@ucalgary.ca.
Department of Psychiatry, Cumming School of Medicine, University of Calgary, Calgary, Canada. bdbultz@ucalgary.ca.

Brian Kelly (B)

Department of Oncology, Division of Psychosocial Oncology, Cumming School of Medicine, University of Calgary, Calgary, Canada.
School of Medicine and Public Health, University of Newcastle, Callaghan, NSW, Australia.

Zeev Rosberger (Z)

Lady Davis Institute for Medical Research, McGill University, Montreal, Canada.

Caitlin Forbes (C)

Department of Oncology, Division of Psychosocial Oncology, Cumming School of Medicine, University of Calgary, Calgary, Canada.

Cindy Railton (C)

Department of Psychosocial Oncology, CancerControl Alberta, Tom Baker Cancer Centre, 2202 2nd Street SW, Calgary, AB, T2S 3C3, Canada.
Faculty of Nursing, University of Calgary, Calgary, Canada.

Meredith Tavener (M)

School of Medicine and Public Health, University of Newcastle, Callaghan, NSW, Australia.

Christopher Lloyd (C)

Oneball Charitable Cancer Organization, Calgary, Canada.

Igor Stukalin (I)

Oneball Charitable Cancer Organization, Calgary, Canada.

Bennett White (B)

Oneball Charitable Cancer Organization, Calgary, Canada.

Fiona S M Schulte (FSM)

Department of Oncology, Division of Psychosocial Oncology, Cumming School of Medicine, University of Calgary, Calgary, Canada. fsmschul@ucalgary.ca.

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