The literature search returned 8880 papers of which 7733 remained after duplicates were removed. Following screening, thirty-nine papers were selected for inclusion in this scoping review, having met the requisite review criteria. The stages of the screening process undertaken to select the papers are depicted in Fig. 1.
An overview of the included papers is given in Table 2, which is split between papers that used a broadly participatory approach to PLiP/PFLiP involvement (n = 24), and papers that used other approaches (n = 14). One review of the literature was also included. The table presents the key features of each paper relating to PLiP/PFLiP involvement as well as evaluation details, main findings and recommendations, where reported.
The majority of the included papers were from the United Kingdom (n = 19) or North America (n = 17, 10 papers from Canada, 7 from the USA), with two more from Australia and one from Malaysia. It is of note that seven of the Canadian papers were generated around one research programme, and two further papers involved some of the same research team. Sixteen of the papers involved only PLiPs in the research process, fourteen included only PFLiPs, and eight involved both PLiPs and PFLiPs. The review paper did not appear to involve people who were or had been in prison in the review process. The numbers of PLiPs or PFLiPs involved in the papers ranged from two to approximately 200. Whilst sixteen papers did not report the gender identities of the PLiPs or PFLiPs involved, and less reported on other demographic details, twelve papers involved females, seven involved males, and four papers included both males and females in the research process. In terms of payment, three studies reported that PLiPs (n = 1, paper 5) and PFLiPs (n = 2, papers: 28,36) were paid. A further four papers (papers 9–10,12,17), all from one research programme, described how involvement in the research team became a prison work placement, ultimately resulting in payment at prison work rates.
Research question one: what were the AIMS of involving people who were or had been in prisons in the research process?
As shown in Table 2, the main aims of PLiP or PFLiP involvement were to make the research more ‘valid’, legible or applicable to prisoners (n = 19, papers5,6,8,10,15,18,20,21,23-28,30,32,35–37); to determine the feasibility as well as benefits and challenges of PLiP or PFLiP involvement in the research process overall (n = 7, papers 3,5,11-13,16,22); to empower PLiPs or PFLiPs, advance social justice or detail commissioned prisoner-led work (n = 8, papers 1,5,9,14,19,25,35,38), and to increase the chances of research success or sustainability (n = 3, papers 4,26,28).
Research question two: in what ways were people who were or had been in prison involved in the research process?
PLiP or PFLiP involvement largely happened within a research-specific group, team or advisory panels, which mostly worked together with academic researchers (n = 26, papers 1–6,8-12,14-17,19,20,25,27–33). Six papers also detailed the involvement of PLiPs or PFLiPs on trial or project steering committees (papers 4,6,31-33,38), in an expert symposium and listening exercises (n = 1, paper 35); and as a co-applicant on projects (n = 2, paper 31,32). One study included was also entirely PFLiP-led and managed research (paper 38).
Figure 2 shows how PLiPs or PFLiPs were involved in each part of the research process. The majority of papers involved PLiP or PFLiPs in generating ideas or, research questions or conceptualising the research and evaluation (n = 23). A very high number of papers involved people in research design (n = 32), predominantly in co-designing or feeding back on research materials (n = 24, papers 1–6,8,11-19,28-30,33,34,36–38), with some studies also reporting involvement in overall research design (n = 16, papers 3–5,7-11,16,18,19,27,28,32,33,35). The majority of papers also involved PLiPs or PFLiP in undertaking research (n = 25) largely in collecting questionnaires (n = 10, papers 1,9-11,13,14,16,17,19,38) or conducting or co-conducting interviews and focus groups (n = 14, papers 1–3,5-7,10,16,19,28-30,36,38); and, in dissemination (n = 27) with PLiPs or PFLiPs authoring or co-authoring papers (n = 22, papers 1–3,5,9-12,14-17,19,22,24,28,29,31-33,36,38), and presenting or co-presenting findings (n = 13, papers 3, 5,6,10-12,15-17,19,27,33,36). A number of studies (n = 22) also involved individuals in feeding back views on preliminary findings, or in the interpretation and analysis of qualitative data, with involvement in quantitative analysis explicitly reported by only two studies, one of which was led by PFLiPs (papers 19,38). This was despite the majority of papers employing a mixed methodology (n = 22; papers 1,3,4,6,9,12-14,16,18-21,23,24,28,31,32,34,36–38), and a further two using a quantitative approach (papers 26,33). The remaining papers used a qualitative methodology or were a review. A large number of studies also involved PLiPs or PFLiPs feeding into, planning or implementing resultant prison programmes or service changes (n = 23).
PLiPs and PFLiPs were less involved in funding or commissioning applications (n = 9), with only three papers reporting PLiPs or PFLiPs as co-authoring, or co-applying for funding applications (papers 12,31,36), and two PLiP and PFLiP-led research teams were commissioned to undertake research (papers 19,38). In addition, only ten papers described involvement in research administration or management which mostly included taking responsibility for the functioning of the research team (papers 4,6,12,15,17,36,38), but also in training research staff (paper 36), and interviewing prospective academic researchers (paper 28). Lastly, there were only thirteen papers that detailed the involvement of PLiPs or PFLiPs in project evaluations, which is described further in Research Question Three.
Research question three: was prisoner involvement evaluated, and how? What were the main findings?
The majority of the papers presented no evaluation of PLiP or PFLiP involvement (n = 26), and indeed the included literature review on prison mental health research found no studies that evaluated the involvement of PLiPs or PFLiPs in the research process (paper 39). Of the twelve papers that did present some evaluative detail, this mostly took the form of PLiP or PFLiP (critical) reflections (papers 3,5,10,12,16,17,19,22,24,27,28,36); one paper subjected the reflections to a qualitative analysis (paper 12), and another paper involved interviewing PLiPs and analysing the data qualitatively (paper 27).
The findings of the papers’ ‘evaluations’ were broken down into impact of involvement on (i) the PLiPs and PFLiPs and (ii) the research and researchers. It is of note, that whilst a number of the papers did not present evaluative or reflective detail, some papers did include authors’ observations on impact, which will also be included here. Regarding (i) impact on PLiPs and PFLiPs, the papers mostly reported positive findings in relation to emotional effects – with increased confidence, optimism and empowerment (n = 12, papers 5,12,15-17,19,22-24,28,33,36), healing, compassion and giving back (n = 9, papers 5,10,11,13,17,19,22,27,36), and understanding and developing a more positive perspective on themselves (n = 7, papers 3,5,9,10,20,27,29). It was also reported that PLiPs and PFLiPs found the work meaningful and purposeful (n = 6, papers 12,16,17,19,20,36), emancipatory (n = 3, papers 3,5,27), that they felt valued and respected (n = 6, papers 3,5,19,27,28,36), and that they appreciated the transferable skills and knowledge that they learned (n = 6, papers 12,15-17,33,36), and the opportunity to be involved in service change and future research work (n = 8, papers 3,5,9,10,20,27,29,32). One paper also suggested that involvement had also increased desistance (paper 27). There were very few negative findings reported, with one paper each respectively reporting: frustration at not being listened to (paper 19), concerns about personal privacy (paper 22), and – more neutrally – that the involvement work had had little impact (paper 27).
The impact of PLiP and PFLiP involvement on (ii) the research process and/or the researchers, largely focused on the process. There were reports that involvement increased understanding and knowledge with PLiP or PFLiPs offering new or more ‘holistic’ insights (n = 10, papers 5,6,10-12,15,16,19,21,23), and enhancing the validity, quality or applicability of the research (n = 12, papers 4,9,16,25,27,28,30,32,33,35,36,38). In addition, seven papers stated that PLiP work contributed to the success of the research (papers 6,10,13,20,22,26,28), co-created service change (n = 8, papers 5,10,13,16,21,23,25,32), and six papers reported that involving PLiP in the research process was feasible (papers 11,13,16,24,33,36). Some of the researchers also reflected on the mutual learning that took place during the process (n = 3, papers 3,10,11), the personal transformative impact on them and their perspectives (n = 4, papers 3,10,11,22), and the impact on them professionally (n = 4, papers 3,5,10,15), including reflecting on their role and purpose, and of the sometimes negative impact of institutions and norms (which they are part of) on the lives of PLiP. There were only four less positive reflections made on the process: that group dynamics were difficult to manage (n = 2, papers 19,28); that conflict arose around using PLiP names and images in project materials – with project staff concerned about how being identified as a PLiP or PFLiP could have a negative impact in future (paper 36); that peer researchers’ lack of experience or use of personal experience may ‘lead’ study participants (paper 30); and that involving PLiPs and PFLiPs in a prison context will always involve methodological compromise (paper 20).
Research question four: what were the main obstacles and solutions for overcoming them?
A number of obstacles to PLiP or PFLiP involvement in research were described. The most frequently reported was that power differences between PLiPs or PFLiPs and academic researchers – amplified when within a hierarchical prison system – meant that the equality inherent in participatory approaches was even more difficult to attain (n = 9, papers 1,3-5,15,19,20,23,24). The impact of prison bureaucracy was also described as a barrier in terms of PLiP availability (n = 6, papers: 1,3,5,16,19,20), lack of computer/internet access limiting types of involvement and communication (n = 3, papers 3,16,19), room availability and interruptions (n = 3, papers: 3,5,16), and limiting researcher access to PLiPs (n = 2, papers 20,22). There were also reported barriers to involvement arising from (ex-)PLiP turnover (n = 3, papers 4,12,33), lack of funding and resources (n = 3, papers: 4,12,22), and a lack of staff belief in the process or research (n = 3, papers: 12,16,19). Three papers also specifically detailed the impossibility of involving PLiPs in their research, so much so that they only involved PFLiPs (n = 3, papers19,28,35). In addition, researchers described dilemmas in conducting research involving PLiPs around voluntariness (papers 5,22), payment (paper 22) and confidentiality (paper 22), as well as university bureaucracy negatively impacting recruitment (paper 28).
In addition, a number of recommendations for the involvement of PLiP and PFLiPs were also made, which included:
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Emphasise staff buy-in (especially senior staff and overall prison governor or warden), common values and goals.
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Ensure adequate funds for the research and staff time to conduct it.
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Designating an administrative worker for the study.
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Training PLiPs for the role and responsibilities expected of them (e.g. facilitating focus groups).
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Not being overly prescriptive about process where PLiP or PFLiPs lead.
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Regularly share feedback of findings and news.
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Paying researchers for their work (e.g. PLiP involvement could become a work placement to enable this.
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Building evaluation into the research design from the beginning.