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Cancer in prison: barriers and enablers to diagnosis and treatment
Jo Armes1, Renske Visser2, Margreet Lüchtenborg3,4
1School of Health Sciences, University of Surrey, UK.
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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