Cancer in prison: barriers and enablers to diagnosis and treatment
Cancer in prison: barriers and enablers to diagnosis and treatment
Background: approximately 82,000 people are in prison annually in England and Wales. Limited research has investigated cancer in this population and none has explored experiences of imprisoned people with cancer. This study aimed to address this gap.
Methods: we conducted 55 semi-structured, qualitative, audio-recorded interviews with: imprisoned people with cancer (n = 24), custodial staff (n = 6), prison healthcare staff (n = 16) and oncology specialists (n = 9). Data were collected 07/10/2019–20/03/2020. Patients were recruited by prison healthcare staff and interviews were conducted face-to-face. Professionals were recruited via professional networks and interviews were conducted face-to-face or via telephone. Transcribed interviews were analysed using reflexive thematic analysis. We also analysed relevant National Cancer Patient Experience Survey (NCPES) questions for those diagnosed in prison (n = 78) and in the general population (n = 390).
Findings: our findings highlight the complexities of cancer care for imprisoned people. We identified three core themes: control and choice, communication, and care and custody. Whilst people in prison follow a similar diagnostic pathway to those in the community, additional barriers to diagnosis exist including health literacy, the General Practitioner appointment booking system and communication between prison and oncology staff. Tensions between control and choice in prison impacted aspects of cancer care experience such as symptom management and accessing cancer information. NCPES results supported the qualitative findings and showed people in prison reported significantly poorer experiences than in the general population.
Interpretation: our findings demonstrate the complexity of cancer care in custodial settings, identifying barriers and enablers to equitable cancer care provision and offering insights on how to improve care for this population.
Funding: National Institute for Health and Social Care Research Delivery Research Programme 16/52/53 and Strategic Priorities Fund 2019/20 Research England via University of Surrey.
Armes, Jo
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Visser, Renske
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Luchtenborg, Margreet
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Huynh, Jennie
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Wheatcroft, Sue
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X, Anthony
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Barber, Alyce-Ellen
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Plugge, Emma
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Taylor, Rachel M.
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Hunter, Rachael Maree
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Davies, Elisabeth Anne
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29 April 2024
Armes, Jo
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Visser, Renske
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Luchtenborg, Margreet
59f0edeb-f7e0-4ecd-bb8f-1d5e4ad1d29d
Huynh, Jennie
594e750d-ae86-4132-90b2-16659cd1b18a
Wheatcroft, Sue
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X, Anthony
9228bfbb-bcec-41db-a289-a11f6c4b387c
Barber, Alyce-Ellen
da97765f-6a6f-4370-91f3-b14a8c1934c1
Plugge, Emma
b64d2086-6cf2-4fae-98bf-6aafa3115b35
Taylor, Rachel M.
279f7c42-2e7c-4c05-833a-f170202324ba
Hunter, Rachael Maree
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Davies, Elisabeth Anne
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Armes, Jo, Visser, Renske, Luchtenborg, Margreet, Huynh, Jennie, Wheatcroft, Sue, X, Anthony, Barber, Alyce-Ellen, Plugge, Emma, Taylor, Rachel M., Hunter, Rachael Maree and Davies, Elisabeth Anne
(2024)
Cancer in prison: barriers and enablers to diagnosis and treatment.
EClinicalMedicine, 72, [102540].
(doi:10.1016/j.eclinm.2024.102540).
Abstract
Background: approximately 82,000 people are in prison annually in England and Wales. Limited research has investigated cancer in this population and none has explored experiences of imprisoned people with cancer. This study aimed to address this gap.
Methods: we conducted 55 semi-structured, qualitative, audio-recorded interviews with: imprisoned people with cancer (n = 24), custodial staff (n = 6), prison healthcare staff (n = 16) and oncology specialists (n = 9). Data were collected 07/10/2019–20/03/2020. Patients were recruited by prison healthcare staff and interviews were conducted face-to-face. Professionals were recruited via professional networks and interviews were conducted face-to-face or via telephone. Transcribed interviews were analysed using reflexive thematic analysis. We also analysed relevant National Cancer Patient Experience Survey (NCPES) questions for those diagnosed in prison (n = 78) and in the general population (n = 390).
Findings: our findings highlight the complexities of cancer care for imprisoned people. We identified three core themes: control and choice, communication, and care and custody. Whilst people in prison follow a similar diagnostic pathway to those in the community, additional barriers to diagnosis exist including health literacy, the General Practitioner appointment booking system and communication between prison and oncology staff. Tensions between control and choice in prison impacted aspects of cancer care experience such as symptom management and accessing cancer information. NCPES results supported the qualitative findings and showed people in prison reported significantly poorer experiences than in the general population.
Interpretation: our findings demonstrate the complexity of cancer care in custodial settings, identifying barriers and enablers to equitable cancer care provision and offering insights on how to improve care for this population.
Funding: National Institute for Health and Social Care Research Delivery Research Programme 16/52/53 and Strategic Priorities Fund 2019/20 Research England via University of Surrey.
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Accepted/In Press date: 26 February 2024
Published date: 29 April 2024
Identifiers
Local EPrints ID: 493483
URI: http://eprints.soton.ac.uk/id/eprint/493483
ISSN: 2589-5370
PURE UUID: 1616f55b-d807-4037-826b-3e87c6e91d62
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Date deposited: 03 Sep 2024 17:06
Last modified: 04 Sep 2024 02:00
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Contributors
Author:
Jo Armes
Author:
Renske Visser
Author:
Margreet Luchtenborg
Author:
Jennie Huynh
Author:
Sue Wheatcroft
Author:
Anthony X
Author:
Alyce-Ellen Barber
Author:
Rachel M. Taylor
Author:
Rachael Maree Hunter
Author:
Elisabeth Anne Davies
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