Visser Renske, Barber Alyce-Ellen, X Anthony, Wheatcroft Sue, Mullen Philip, Armes Jo
University of Surrey, School of Health Sciences, Guildford, UK.
Revolving Doors Agency, 90 London Rd, Elephant and Castle, London, SE1 6LN, UK.
Res Involv Engagem. 2021 Jun 29;7(1):48. doi: 10.1186/s40900-021-00284-z.
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.
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.
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.
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.
患者及公众参与在健康研究中日益被视为重要因素。本文从学术和生活经验两个视角，反思了让有生活经验者参与一项探索监狱癌症护理的研究，以及这样做如何丰富了研究过程。
本文基于参与一项探索监狱中癌症患者诊断与治疗研究的生活经验研究者和学术研究者的书面及口头反思。该研究包括对监狱中的癌症患者、监狱医护人员、肿瘤专家和监管人员进行访谈。生活经验研究者参与了整个研究过程，包括与患者共同进行访谈和分析访谈内容。
本文强调了在整个研究过程中纳入生活经验研究者的重要性和价值。我们反思了监狱生活经历如何塑造在监狱进行访谈和分析所收集数据的体验。我们反思了学术研究者与生活经验研究者之间的工作关系。我们展示了监狱研究具有挑战性，但生活经验研究者与学术研究者之间的合作有助于更好地为实地研究做准备，提出更有意义的问题，并与参与者建立融洽关系。这类合作对于学术研究者和生活经验研究者而言都是强大的技能发展途径，但它们需要投入时间并愿意共同学习。
为使学术研究者和生活经验研究者成功且有意义地合作，需要用心建立开放、诚实和平等的工作关系。学术研究者和生活经验研究者的技能发展很重要。致力于建立和维护关系至关重要。有第三方作为调解人可以促进和培养这些关系。特别是对于有监狱生活经验的人，将“不造成伤害”原则付诸实践并提供相应支持以尽量减少伤害至关重要。
