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Table 2 Study features

From: Patient and public involvement (PPI) in prisons: the involvement of people living in prison in the research process – a systematic scoping review

Study
No
Author;
Year;
Country
Study aim PPI aim or PPI paper aim PPI type Type of prisoner Sample size & type Prison type Evaluation & type Outcomes
(i) Prisoners
(ii) Research(ers)
(i) Obstacles & (ii) recommendations
(i) Participatory Approaches
 1 Buchanan et al., 2011; Canada To under-stand PLiPs reasons for substance misuse Social justice, collaboration, increase sense of control Participatory research;
peer researcher in health research team
PLiPs & PFLiPs n = 88, female, similar to prisoner population, reportedly Female, min/medium security prison No None reported None reported
 2 Crabtree, Ohm et al.;
Crabtree, Ohm, et al., 2016
USA
To evaluate an occupati-onal therapy programme Not reported PAR model; met 3–4 times per month PLiPs n = 3, male Male minimum security prison No (i) None reported; (ii) reflected on potential bias in analysis (academic & prisoner) (i) bureaucracy affected prisoner availability; (ii) none reported
 3 Crabtree, Wall et al.; Crabtree, Wall, & Ohm, 2016;
USA
To evaluate an occup-ational therapy programme Reflective account of PPI, benefits & challenges PAR model; met 3–4 times per month PLiPs n = 3, male, all had college degrees & had worked as clerks Male minimum security prison Yes; critical reflection; (i) an opportunity, helped make sense of prison experience – a ‘palliative’; respect, dignity & relationships important; emancipatory; (ii) PAR team as ‘perfect storm’; mutual learning; significant personal & professional impact; furthered cause of ‘occupational justice’ (i) power skewed; unable to do internet-based research; bureaucracy affected prisoner & room availability; (ii) helps if have pre-existing trust; minimum security prisons; ex-prisoners for analysis; use in-house messaging system to communicate; more participation; important to see change of feel like a system stooge.
 4 Curd et al.;
Curd et al., 2007;
USA
Evaluation of wellness intervention in substance abuse programme To ensure the programme success & sustain-ability CBPR model – wellness committee, evaluation advisory panel (EAP) PLiPs n = 2 on committee; n = 6–8 in EAP, male Male min security prison – TC No (i) sense of ownership; (ii) developed a more valid intervention (socially & scientifically), involvement in administration relieved staff burden (i) staff and prisoner turnover, hierarchy, scarce resources, poor data systems; (ii) get staff buy-in, especially seniors; involve in administration to relieve staff burden; turnover can be an opportunity to refresh if some older members remain;
 5 Fields et al.;
Fields et al., 2008;
USA
To reflect on a sexuality focused programme Foreground prisoner views; determine PAR feasibility; increase understanding & validity PAR - workshops with education & research PLiPs, & at least one PFLiP n = 74, female, average age 36 years (range 19–63), priority to women of colour; paid Female county jail, CA Yes; reflected on process throughout (i) increased confidence, compassion empathy, respect, optimism; felt valued; explore own life; use intelligence; (ii) PAR in prison a “particularly liberatory act” (pg 80); roles over-lapped & changed; mutual learning; researchers & institutions all contribute to female prisoner issues (exploit or insensitive); less about health issue & more of relationships, & inequality of race & poverty; never gained full trust – equality elusive; improved the service (i) power differences; bureaucracy affecting prisoner availability & interrupting process; difficult to promote sexual expression in oppressive system; voluntary attendance may not be possible; (ii) training; design research so women can dip in & out but still contribute (cyclical); opportunities for paid researcher roles on release;
 6 Hatton & Fisher;
Hatton & Fisher, 2011;
USA
To explore the impact of prison & copayment of fees, on health To describe how PPI facilitated understanding CBPR – formed community advisory board (CAB) PFLiPs N = 3, CAB members Female prison No (i) strengthened case of prison advocates; (ii) increase credibility of research to prisoners; prisoners as bridge in communications with prisoners; vital in analysis; builds knowledge & evidence (i) only included ex-prisoners as minimised further research obstacles & staff retribution; (ii) help if have positive pre-existing relationship; use of ex-prisoners and confidentiality certificates
 7 Hatton et al.;
Hatton et al., 2006;
USA
To explore prisoner health problems & care Not reported Participatory research in collaboration with an NGO including ex-prisoners PFLiPs from local NGO Not reported Female county prison, Western USA No None reported (i) none reported; (ii) training on focus group facilitation
 8 Kendall et al.,
Kendall et al., 2020,
Australia
Explore experiences of accessing healthcare and limitations of ‘equal treatment’ Ensure research & community priorities mesh; use valid concepts, establish an advisory group Community collaborative participatory action research PLiPs Forty-three Aboriginal women Urban and regional prisons in NSW No None reported None reported
 9 Martin, Adamson et al.; Martin et al., 2013
Canada
To evaluate the pilot of a fitness programme To design, lead & evaluate PAR –participatory research team led by prisoner PLiPs Not reported, female Female, min/medium security prison No (i) researchers working in community on related work, post-release; (ii) resultant programme designed & implemented by prisoners, a strength None reported
 10 Martin, Korchinski et al.; Martin et al., 2017;
Canada
Team reflection on prisoner participa-tion PPI involved collabora-tion across the whole project PAR – research team prisoner-led PLiPs & PFLiPs Not reported Female provincial prison Yes, reflection (i) healing/transformative, giving back; continued with interventions post-release; (ii) change can happen when collaborate; altered personally & professionally; new knowledge & relationships; mutual learning; introduced spiritual health as a factor; (i) research ended when prison warden retired; (ii) need for senior staff buy-in
 11 Martin, Murphy, Chan et al.;
Martin, Murphy, Chan, et al., 2009; Canada
To explore prisoners’ health issues Feasibility of doing PAR in prison; research design & conduct CBPR & transformative action research team PLiPs n = 120 at a group event, female Female, min/medium security prison No (i&ii) authors reported it was healing & transformative for all; (ii) feasible for prisoners to do research; mutual learning; many questions and possible interventions suggested, prison elders can ‘control’ groups better (i) none reported; (ii) training in transcription; importance of warden support
 12 Martin, Murphy, Hanson, et al., 2009; Canada To explore prisoner’s health issues & goals Description of a PAR process; design & develop research Participatory action research team PLiPs & PFLiPs n = 190 across the project life span, female Female, min/ medium security provincial prison Yes, reflect-ion & quali-tative analysis (i)meaningful, supportive; increased hope, confidence, communication & transferable skills; altered perspective; (ii) prison as a good place to do participatory work; challenged reductionist conceptions of health – more holistic, ideas larger in scope; learn process by doing (i) lack of staff buy-in; lack of funding; prisoner turnover; (ii) trained to transcribe; emphasise values and targets in common between staff and research – especially senior; helpful to have a research assistant sustain focus in midst of prisoner changes
 13 Martin, Turner et al.; Martin et al., 2018; Canada The feasibility of implementing HIV prevention in prison Feasibility of research; Views on future projects, build capacity & partnership Community-Based Research (CBR) PLiPs & PFLiPs n = 12; 3 Aboriginal, average age 50 years (range 30–65) Male, medium security federal prison, West Canada No (i)increase empathy & sharing, helping others; (ii) participatory work feasible; prisoner involvement increased uptake of unpopular service (i) prisoners lack trust; (ii) if subject is important enough, men will engage; combining professional and prisoner-led sessions; use of tutor with personal experience of topic
 14 McLeod et al.,
McLeod et al., 2020,
Canada
Describe a peer health mentoring program for released women Create social action; improve quality of life Participatory health research framework PFLiPs 340 women Correctional Facility for Women, Canada No None reported None reported
 15 Meyer & Fels;
Meyer & Fels, 2009;
Canada
To explore prisoner health issues Reflection on the project; focus on analysis PAR - team PLiPs Not reported, female Female prison No (i)reportedly empowered; transferable skills; (ii) better understanding to analysis – that which is not understandable outside; impacts on roles and way they research see institutions; women know what they need (i) power differences; bias towards researcher interpretation; project closed when warden left; (ii) support of prison warden; follow prisoners when they alter focus – allow to change scope & focus, and be ‘other’; listen; prison staff to hear prisoner stories; not about teaching women, but engaging
 16 Perrett et al.,
Perrett & Gray, 2020,
UK
To report on work undertaken with PLiPs on health & wellbeing, and process of peer research Explore feasibility of PLiPs as peer researchers as part of educational initiative Participatory Action Research (PAR) PLiPs 154 men on the vulnerable prisoners unit Long stay private prison in Wales, UK Yes, reflection from one peer researcher only (i) Establishment of the project, data collation and direct communication with management empowering; enabled access training and education, learning new skills; altered power balance; interesting and motivating
(ii) findings more representative; facilitated all-prison approach to wellbeing; senior management made aware of issues
(i) process was logistically complicated; focus groups negatively affected by staffing and regime changes (inc. cancellations, need for escorts); limited access to IT causing lots of difficulty;
(ii) build in impact evaluation from the start; good prison staff-project staff communication needed; staff buy-in key at all stages, especially management support
 17 Ramsden et al.;
Ramsden et al., 2015;
Canada
To explore ways to improve prisoner health & wellbeing An analysis of prisoner’s writing CBPR & transformative action research; peer researchers - team - team PLiPs & PFLiPs n = 200 approx; 39% < 30 years Female, min/ medium security prison Yes, reflect-ion (i)reportedly transformative & empowering; transferable skills; sense of purpose; optimistic; planning futures; (ii)shared knowledge valued by prison community & contributors (i) none reported; (ii) feedback on research to prison & contributors – creates relationships; involvement became a work placement, so could be paid; prisoners allowed internet access- could contribute to literature reviews
 18 Sherwood & Kendall, 2013; Australia To explore the ‘Social & Cultural Resilience & Emotional Wellbeing of Aboriginal Mothers in Prison’ project Description of the participatory approach; feedback on research material Community Collaborative PAR model PFLiPs Not reported, all prisoners Aboriginal n = 3; all prisons in New South Wales holding women No None reported None reported
 19 Sullivan et al., 2008; UK To explore relapse prevention; evaluate relapse prevention course Prisoner-led campaign, assisted by researcher PAR – member of action research group: Breaking the Chain’ PLiPs n = 8; all male, all wing drug represent-tatives HMP Grendon: Cat B male prison, wings run as TCs Yes, reflection (i) enjoyed success & process; increased confidence, caring, empowerment; opinions valued; but, anger & disillusionment when staff not interested in findings; (ii) have knowledge of system; just a group member; difficult when group angry, but other group members helped group move on (i) power differences; lack of staff interest; computer access, security issues & unreasonable internal deadlines limited prisoner authorship; (ii) initially academic researchers may need to take a more facilitative and administrative role; (ii) get staff buy-in; negotiate security & access issues at each prison locally
 20 Townsend
Townsend, 2001; Malaysia
To explore ways to improve care for people who are HIV+ To generate ideas to improve care & support Participatory assessment process, Participatory Learning & Action tools – formed groups PLiPs Prison 1: n = 8; female; Prison 2: n = 12, male, Prison 3: n = 30, male; all HIV+ status N = 3; Prison1: female prison; Prisons 2 & 3: male prisons No (i) stimulating, diverting, prestigious; (ii) trust, rapport, motivates; representativeness of prisoners only semi-so; group autonomy important; participatory process key, but “a degree of methodological compromise will probably be inevitable” (pg 10) (i) prison needs, rather than prisoners’, dictated the research; inter- and intra-group dynamics can negatively impact process; researcher access limited; bureaucracy limits; (ii) de-emphasise goals of social change to officials; manage group dynamics; prisoner groups need to become autonomous quickly; compress research activity as much as possible; manage prisoner expectations; do not curtail freedoms
 21 Ward & Bailey, 2011; UK To develop a self-harm training package for staff To identify staff training needs, and ways to address them PAR PLiPs Mapping (n = 9); group (n = 16–20); interviews (n = 15); surveys (n = 50); female; mean age 36 yrs. (range 18–58) Female prison, England No (i) hope there were benefits in effecting change; (ii) key in identifying knowledge gaps; PAR important if trying to have an equivalence between healthcare research in the community and prison (i) prisoners involved may not be representative – although not a significant issues; (ii) none reported
 22 Ward & Bailey, 2012; UK To develop self-harm care pathways Examine ethical dilemmas of the research PAR PLiPs n = 2, female Female prison, England Yes. Reflection (i) change should directly benefit; optimism, confidence, insight, good to help others & share; concerns re privacy allayed; empowering, gives agency; (ii) positive experience; PAR as good way to develop services (i) bureaucracy affects access; potential for ‘vicarious’ trauma; coercion problematic; dilemma of payment; can’t offer full confidentiality; budget cuts de-prioritised research; (ii) get unescorted prisoner access; supervision & occupational health access; balance needs & compromise – pick battles that are most important to prisoners and staff; take time with informed consent; transparency in reporting
 23 Ward & Bailey, 2013; UK To develop self-harm care pathways To identify service gaps & staff training needs PAR PLiPs Mapping (n = 9); group (n = 16–20); interviews (n = 15); questionnaires (n = 50); female; mean age 36 years (range 18–58) Female prison, England No (i)reportedly empowering; (ii) prisoners take a more holistic approach; PAR can create change and work as well as in the community, despite lack of policy support (i) power differences led to not training prisoners as researchers; (ii) find other ways to involve prisoners than trained researchers
 24 Ward, Bailey & Boyd; Ward & Bailey, 2012; UK To improve outcomes for people who self-harm To identify needs regarding staff training PAR PLiPs Not reported, female Female prison, England Yes, one prisoners’ reflections (i)increased confidence, insight; altered staff behaviour positively; positive to see changes, blurred prisoner-staff divide; (ii) PAR possibly beneficial to staff & prisoners (i) power differences; and concerns about ‘teaching’ staff as a potential problem; (ii) none reported
(ii) Other approaches
 25 Antoniou et al.,
Antoniou et al., 2019,
Canada
To identify the main barriers to engaging with HIV-related medical & social care post-release To inform programme design, and give people a voice in research and programme Concept mapping PFLiPs with HIV 39 participants n/a No (i) Not reported
(ii) Analysis occurred in real-time with concrete recommendations rather than later and researcher only; findings informed development of a programme for formerly incarcerated people with HIV.
None reported
 26 Apa et al.;
Apa et al., 2012;
USA
To explore risk factors for spread of staph infection To get feedback & increase support for the study No approach reported PLiPs Not reported n = 2, max security, female & male No (i) none reported; (ii) collaboration with prisoner groups can increase study support (i) none reported; (ii) useful to work with groups that represent prisoners in prison
 27 Awenat et al.;
Awenat et al., 2017; UK
RCT of suicide prevention therapy To examine prisoners’ experience; to improve study’s ‘ecological validity’ Based on INVOLVE model; monthly Service User Research Group (SURG) meetings PFLiPs n = 4; 2 male, 2 female; “mixed ethnicity”; age range 40–60 years Male prisons – overall study Yes. Quali-tative; inter-views, IPA analysis (i) positive to effect change, share ideas; mutual respect, felt valued, make good of bad & give back, positive change in self-perception & perception by others; impacted desistance; one member reported little impact; (ii) guided study amendments – improved quality; may be more important for ex-prisoners because of stigmatised identities (i) none reported; (ii) training – six-day Master’s level research module; honorary university contracts and staff cards; positive relationships with academic researcher key; open feeling to meetings so free to share views
 28 Byng et al.;
Byng et al., 2012;
UK
To explore continuity of care, & improvements To increase access to participants, make research & materials more legible No approach reported; peer researchers - Offender Research Group PFLiPs n = 13; paid Various-not reported Yes, critical reflection (i) some felt valued, more confident & optimistic, less isolated; training led to confidence; (ii) strengthened process – “subtle fusion of ideas throughout” (pg 188) (i) difficulties setting up research groups in prison; university bureaucracy in hiring ex-prisoners led to some dropping out; difficulty managing group dynamics; (ii) allocate enough time; pay researchers & have a lead; training
 29 Cornish et al., 2016; UK To examine older prisoner experiences of release Not reported No approach reported– Older prisoner users’ group PFLiPs Not reported n = 5 No (i) not reported; (ii) prisoners experiences helpful in exploring the experiences of peers (i) none reported; (ii) training to conduct interviews
 30 Edge et al.,
Edge et al., 2020,
UK
To develop an understanding of equivalence via accounts of PLiPs secondary (hospital) care experience To ensure methods are acceptable; to clarify terminology Peer-led research (approach not defined) PFLiPs from a prison charity N-45. Focus groups (n = 5) and 1:1 interviews (n = 17) Five English prisons – male & female. No (i)Not reported
(ii) Believed participants more empowered & gave more honest accounts; terminology clarified; ensured methods acceptable. But, lack of experience and use of own experiences may ‘lead’ participants
None reported
 31 Forsyth et al., 2017; UK To study the effective-ness of a health & social care assessment & planning tool for older prisoners Not reported No approach reported. Action learning group; ex-prisoner co-applicant; trial steering committee members PLiPs in group; PFLiPs on committee & co-applicant Group=
unreported; co-applicant = 1; committee member = 2
Group, n = 1; n = 10 in overall study - from open to training to high security No (i)reportedly valued contributing to change; (ii) valued by team across the study None reported
 32 Forsyth et al.,
Forsyth et al., 2020,
UK
To establish prevalence of dementia and mild cognitive impairment in prisoners in England and Wales and their health and social care needs To give input to study proposal, and advice throughout; ensure consider needs of older people PPI PFLiPs One PFLiP was a co-applicant; with a further research group of four PFLiPs involved 77 prisons in England and Wales – mixed establishments No (i) PFLiPs reportedly welcomed research, believing it to fell a gap and help with service development
(ii) Input to research design was useful; input to development of training and intervention considered meaningful
None reported
 33 Hassan et al., 2014; UK To explore prevalence & accept-ability of psycho-tropic medication prescribing Not reported No approach reported. Monthly research advisory group PFLiPs N = 7 regular member; male & female; all used prison healthcare n-11 in study; male & female No (i)improved confidence, communication & networks; accessed training; (ii) ‘Proved’ possible to have a group of ex-prisoners work across the lifespan of a study advice on system & recruitment invaluable; made research more effective (i) difficulties recruiting led to delays in project; team changes; skill mix; (ii) access to training; collaborating with departments with PPI experience helped recruitment; have group terms of reference & codes of conduct; explain & clarify everything as differing skills; allocate enough time & resources; have administrative help
 34 Howerton et al., 2009; UK To examine influences on prisoners seeking help for mental health problems on release Not reported No approach reported. Collaborated with an NGO’s user group PFLiPs Not reported Male, Cat B prison, South England No None reported None reported
 35 South et al., 2014; UK To systematically review prisoner peer health prog-rammes Opportunity for dialogue, & application of findings PPI – expert symposium (lay experts), & listening exercises PFLiPs: symposium & listening exercise; PLiPs: listening exercise Symposium: unreported; Listening exercises = 8 per prison approx.; all peers or peer supported n = 3: Cat B local, high security & female prison; in NW England No (i)not reported; (ii) PPI as integral; symposium added context, led to a variety of grey literature & intervention types (i) unable to have serving prisoners at public meetings, so excluded from symposium; questions around representativeness when prisoners selected by staff; (ii) none reported
 36 Taylor et al., 2018; UK RCT for a mental health intervention To present ways prisoners involved; to contribute to design & delivery PPI – peer researchers; fortnight group PFLiPs n = 8 – rolling member-ship; male; aged 25–56 years, paid n/a Yes, reflect-ion (i)increased confidence to make change – aided recovery, skills & knowledge; did not feel judged; cared for, valued, purposeful, making good of bad; (ii) ex-prisoners can do & develop research, interventions & theory; focus groups – more engaged; analysis – more depth; intervention more applicable; helped explain purpose better; desk-based researchers had contact with study population; emphasised importance of family – and so new aspect to study (i) conflict over name/image use when disseminating –acknowledgement v future difficulties; (ii) committed, skilled team; funding, staff & system to pay researchers in cash; staff to maintain team contact including returns to prison; meetings in neutral place, relaxed, inclusive and regular – intensive bursts; rolling membership; end date clear; celebrate success & invite family in; continual feedback; use a peer researcher label on materials; compromise on name/image use; support prisoners’ plans; understand role of peer researchers to challenge.
 37 Treacy et al., 2019; UK To evaluate dementia friendly community approach To assess need for dementia initiatives; material alterations PPI PLiPs n = 46 (prison A = 16; prison B = 30); all male n = 2,; Cat C sex off-ender & local prisons, male No (i) none reported; (ii) prisoner input invaluable in involved study tasks (i) difficulties involving prisoners living with dementia; (ii) none reported
 38 User Voice;, 2016; UK To explore extent of ‘spice’ use & linked problems The study was managed and led by a peer-led organisation Peer-led research, so no approach as such PFLiPs mostly; PLiPs for some tasks n = 9; Cat C prisoners, England; geography-ically represent-ative n/a No (i)not reported; (ii) more likely to increase trust, rapport & insights from prisoners if speaking to someone from a similar background None reported
(iii) Review
 39 Samele et al., 2008; UK A review of prisoner involvement in mental health research Not reported Not reported Not reported Not reported n/a n/a (i) none reported; (ii) Essentially, there were no examples of service user involvement in mental health research in prisons, lagging behind community research (i) possible bias of staff selecting prisoners; bureaucracy affects availability; payment is contentious; power differences; prison & research bureaucracy; (ii) consulting forensic involvement projects, and prisoner councils & service development projects for guidance; need time & resources; staff buy-in and liaison person; negotiate around prisoner selection; not to raise expectations; support to be involved; address issues of confidentiality; provide training – should lead to skills and qualifications; agree roles; educate prison staff
  1. Abbreviations: PLiP=People Living in Prison; PFLiP=People who Formerly Lived in Prison; CBPR = Community-Based Participatory Research; PAR = Participatory Action Research; TC = Therapeutic Community