Collaboration with people with lived experience of prison: reflections on researching cancer care in custodial settings

Abstract

Background Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. Methods This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. Results This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. Conclusions For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this.

Opportunities and challenges in involving people with lived experience of inclusion health as co-researchers in palliative and end of life research: a rapid review and thematic synthesis

“…Electronic database searches identified 6446 papers after de-duplication. After completion of the screening process outlined earlier, three papers remained eligible for inclusion in the analysis [ 34 – 36 ]. The full study selection process can be seen in Fig.…”

“…Of the three included papers, two involved individuals with lived experience of incarceration: experience of cancer care in prison [ 34 ], and experience of providing palliative and end of life care in prison settings [ 35 ]. The latter used professionals and prison-staff as a proxy for prisoner views and experiences.…”

“…The third report involved women with previous lived experience of homelessness [ 36 ]. Specifically, the lived experience voices represented from individual studies within the current review are: two women and one man with lived experience of cancer care in prison-settings [ 34 ]; two women with lived experience of homelessness (referred to as ex-service users) [ 36 ]; and eighteen professionals responsible for provision of end of life care in prison-settings (used as a proxy of inmates themselves due to concerns over wellbeing and emotional burden) [ 35 ]. There were no papers offering reflections or guidance on involving individuals with lived experience of sex work or substance use disorder in palliative and end of life care research (Table 4 ).…”

“…All three papers offered reflection-based feedback, with some general advice. Two papers [ 34 , 36 ] utilised reflections from both the lived experience co-researchers and the academic researchers. The third offered general reflections from the perspective of the research team, although no quotes or individualised feedback was included.…”

“…Only one paper reported involving lived experience co-researchers throughout the entire research process [ 34 ] including: conceptualisation, development of study materials, involvement in data collection via conducting interviews (with an academic researcher), and data analysis. The other two papers utilised lived experience co-researchers in an advisory manner; they were consulted regarding study materials and procedures, but their involvement did not extend to data collection or analysis [ 35 , 36 ].…”