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From pelvic radiation to social isolation: a qualitative study of survivors’ experiences of chronic bowel symptoms after pelvic radiotherapy

Lookup NU author(s): Adam Biran, Dr Christina DobsonORCiD, Professor Colin Rees, Professor Linda Sharp

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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


Abstract

© 2024, The Author(s).Purpose: We explored survivors’ experiences of chronic bowel symptoms following pelvic radiotherapy, strategies employed in living with these symptoms, effects on daily activities, and roles at home and in the workplace. Methods: Semi-structured interviews were conducted with 28 individuals (10 gynaecological, 14 prostate, four anal/rectal cancer survivors) who had completed pelvic radiotherapy at least six months prior to data collection and who had experience of bowel symptoms during this post-treatment period. Reflexive thematic analysis was undertaken. Results: We propose four themes describing a process leading from experience of symptoms to withdrawal from activities and roles. These are (1) losing control (the experience of unintended anal leakage or discharge); (2) experiencing embarrassment and fear (the experience of embarrassment or fear of embarrassment as a result of discharge becoming public); (3) managing and reacting (acting to reduce the likelihood of discharge or to prevent this becoming public); and (4) restriction and withdrawal (avoiding specific activities or situations so as to reduce or remove the risk of embarrassment). Returning to the workplace presented additional challenges across these themes. Conclusions: Impacts of chronic bowel symptoms can be severe. Survivors employ a variety of methods and strategies in living with their symptoms. Some of these support continued role fulfilment but some constitute a withdrawal from pre-treatment roles. Current healthcare provision and statutory protections fail to fully meet needs following pelvic radiotherapy. Implications for cancer survivors. There is a need to develop and implement evidence-based services and supported self-management programmes for survivors experiencing chronic bowel problems post-radiotherapy.


Publication metadata

Author(s): Biran A, Dobson C, Rees C, Brooks-Pearson R, Cunliffe A, Durrant L, Hancock J, Ludlow H, Neilson L, Wilson A, Sharp L

Publication type: Article

Publication status: Published

Journal: Journal of Cancer Survivorship

Year: 2024

Pages: epub ahead of print

Online publication date: 06/01/2024

Acceptance date: 20/12/2023

Date deposited: 18/01/2024

ISSN (print): 1932-2259

ISSN (electronic): 1932-2267

Publisher: Springer

URL: https://doi.org/10.1007/s11764-023-01527-6

DOI: 10.1007/s11764-023-01527-6

Data Access Statement: The anonymised transcripts analysed during the current study may be available from the corresponding author upon reasonable request for a period of 5 years following the end of the study.


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Funding

Funder referenceFunder name
3-D Matrix #302062

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