Table 2 Study features

 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

 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

 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