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Abstract

Public involvement in research is advocated by research authorities and funding bodies worldwide. In the United Kingdom (UK), it is considered achievable and expected in all types of health and social care research. However, lived-experience involvement in prison and forensic mental health research remains rare. This qualitative study reports the experiences of National Health Service (NHS) staff, probation staff, and people with lived experience collaborating in a unique research group within a secure mental health setting in England. Qualitative interviews were undertaken with six staff and four lived-experience researchers. Reflexive thematic analysis was applied, supported by NVivo software. Two themes were identified: Relationship Matters and This Feels Valuable, each with two subthemes: Balancing the Scales and Safe and Secure; and Collaboration Improves Our Research, but It's Challenging and Personal and Professional Growth. This study provides evidence that collaborative research can benefit forensic mental health settings and outlines factors that contributed to positive experiences for the researchers. There was lived-experience involvement throughout this study.

Keywords

public involvement participatory research forensic mental health secure service probation offender personality disorder pathway

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References

Abram

Awenat

Byrne

Fin

Finlayson

Foat-Smith

Galarza

Haddock

Jackson

Lee

Melia

McCulla

Messham

Mulligan

Wardle

(2020). A pilot study exploring the utility of a “therapeutic research group” intervention for people experiencing psychosis related difficulties. Advances in Mental Health, 18(2), 179–196. https://doi.org/10.1080/18387357.2019.1604070

Awenat

Y. F.

Moore

Gooding

P. A.

Ulph

Mirza

Pratt

(2018). Improving the quality of prison research: A qualitative study of ex-offender service user involvement in prison suicide prevention research. Health Expectations, 21(1), 100–109. https://doi.org/10.1111/hex.12590

Beresford

(2020). PPI or user involvement: Taking stock from a service user perspective in the twenty first century. Research Involvement and Engagement, 6(1), 1–36. https://doi.org/10.1186/s40900-020-00211-8

Biddle

M. S. Y.

Gibson

Evans

(2021). Attitudes and approaches to patient and public involvement across Europe: A systematic review. Health & Social Care in the Community, 29(1), 18–27. https://doi.org/10.1111/hsc.13111

Braun

Clarke

(2022). Thematic analysis: a practical guide. Sage Publications Ltd.

Canadian Institutes of Health Research, Research and Knowledge Translation. (2023, November 7). Strategy for patient-oriented research. CIHR. Retrieved July 08, 2024, from https://cihr-irsc.gc.ca/e/41204.html

Chambers

Gallagher

Borschmann

Gillard

Turner

Kantaris

Sayer

(2014). The experiences of detained mental health service users: Issues of dignity in care. BMC Medical Ethics, 15, Article 50. https://doi.org/10.1186/1472-6939-15-50

Haarmans

Perkins

Jellicoe-Jones

(2020). It’s us doing it!” The power of participatory action research in prison: A contradiction in terms? International Journal of Forensic Mental Health, 20(3), 238–252. https://doi.org/10.1080/14999013.2020.1863524

Hall

(1982). Breaking the monopoly on knowledge: Research methods, participation, and development. Participation Research Network Series, 1, 13–26. Retrieved November 21, 2023, from www.pria.org/knowledge_resource/Creating_Knowledge_-_A_Monopoly_-_Participatory_Research_in_Development.pdf

10.

Health Research Authority. (2024). Putting people first – embedding public involvement in health and social care research. Retrieved November 18, 2024, from https://www.hra.nhs.uk/planning-and-improving-research/best-practice/public-involvement/putting-people-first-embedding-public-involvement-health-and-social-care-research/.

11.

Jagosh

Macaulay

A. C.

Pluye

Salsberg

Bush

P. L.

Henderson

Sirett

Wong

Cargo

Herbert

C. P.

Seifer

S. D.

Green

L. W.

Greenhalgh

(2012). Uncovering the benefits of participatory research: Implications of a realist review for health research and practice. The Milbank Quarterly, 90(2), 311–346. https://doi.org/10.1111/j.1468-0009.2012.00665.x

12.

Javanparast

Robinson

Kitson

Arciuli

(2022). Embedding research codesign knowledge and practice: Learnings from researchers in a new research institute in Australia. Research Involvement and Engagement, 8, Article 71. https://doi.org/10.1186/s40900-022-00392-4

13.

Livingston

J. D.

Nijdam-Jones

Team

P. E. E. R.

(2013). Perceptions of treatment planning in a forensic mental health hospital: A qualitative, participatory action research study. International Journal of Forensic Mental Health, 12(1), 42–52. https://doi.org/10.1080/14999013.2013.763390

14.

Markham

(2025). Stigmatization and marginalization of forensic psychiatric patients. Illness, Crisis & Loss, 33(3), 613–635. https://doi.org/10.1177/10541373241268095

15.

McCracken

(2019). Learning With Women in Jail: Creating Community Based Participatory Research. Springer Nature.

16.

McKeown

Byrne

Cade

Harris

Wright

(2023). The secure quality involvement (SeQuIn) tool: Benchmarking co-production in secure services. Journal of Forensic Practice, 25(2), 98–113. https://doi.org/10.1108/JFP-01-2022-0001

17.

McLeod

K. E.

Korchinski

Young

Milkovich

Hemingway

DeGroot

Condello

Fels

Buxton

J. A.

Janssen

P. A.

Granger-Brown

Ramsden

Buchanan

Martin

R. E.

(2020). Supporting women leaving prison through peer health mentoring: A participatory health research study. CMAJ Open, 8(1), E1–E8. https://doi.org/10.9778/cmajo.20190106

18.

National Health and Medical research Council. (2024). Expectations and Value - Framework for Effective Consumer and Community Engagement in Research. Retrieved July 08, 2024, from www.nhmrc.gov.au/about-us/consumer-and-community-involvement/consumer-and-community-engagement.

19.

National Health Service (NHS) England. (2023). The offender personality disorder (OPD) pathway: a joint strategy for 2023 to 2028. Retrieved July 08, 2024, from https://www.england.nhs.uk/long-read/the-offender-personality-disorder-pathway/.

20.

National Institute for Health research. (2021). Guidance on co-producing a research project. Retrieved July 08, 2025, from https://www.learningforinvolvement.org.uk/wp-content/uploads/2021/04/NIHR-Guidance-on-co-producing-a-research-project-April-2021.pdf.

21.

Pilgrim

(2018). Co-production and involuntary psychiatric settings. Mental Health Review Journal, 23(4), 269–279. https://doi.org/10.1108/MHRJ-05-2018-0012

22.

Policy Lab. (2024). Lived experience in policymaking guide Reflections on the principles, behaviours, and mindsets that underpin lived experience work. Retrieved June 15, 2025, from https://openpolicy.blog.gov.uk/wp-content/uploads/sites/35/2024/03/PL_Livedexperienceguide_v6-1.pdf.

23.

Rose

Kalathil

(2019). Power, privilege and knowledge: The untenable promise of co-production in mental “health”. Frontiers in Sociology, 4, 57. https://doi.org/10.3389/fsoc.2019.00057

24.

Rutherford

Bowes

Cornwell

Heggs

Pashley

(2024). A systematic scoping review exploring how people with lived experience have been involved in prison and forensic mental health research. Criminal Behaviour and Mental Health, 34(1), 94–114. https://doi.org/10.1002/cbm.2324

25.

Rutherford

Pashley

Bowes

Heggs

Cornwell

(2025). Rapid review of literature reporting the experience of patient and public involvement in prison and forensic mental health research. International Journal of Mental Health Nursing, 34(1), e13483. https://doi.org/10.1111/inm.13483

26.

Ryland

Cook

Ferris

Markham

Sales

Fitzpatrick

Fazel

(2022). Development of the FORUM: A new patient and clinician reported outcome measure for forensic mental health services. Psychology, Crime & Law, 28(9), 865–882. https://doi.org/10.1080/1068316X.2021.1962873

27.

Sangill

Buus

Hybholt

Berring

L. L.

(2019). Service user’s actual involvement in mental health research practices: A scoping review. International Journal of Mental Health Nursing, 28(4), 798–815. https://doi.org/10.1111/inm.12594

28.

Staniszewska

Brett

Simera

Seers

Mockford

Goodlad

Altman

D. G.

Moher

Barber

Denegri

Entwistle

Littlejohns

Morris

Suleman

Thomas

Tysall

(2017). GRIPP2 Reporting checklists: Tools to improve reporting of patient and public involvement in research. British Medical Journal, 358, J3453. https://doi.org/10.1136/bmj.j3453

29.

Tambuyzer

Pieters

Van Audenhove

(2014). Patient involvement in mental health care: One size does not fit all. Health Expectations, 17(1), 138–150. https://doi.org/10.1111/j.1369-7625.2011.00743.x

30.

Taylor

Gill

Gibson

Byng

Quinn

(2018). Engaging “seldom heard” groups in research and intervention development: Offender mental health. Health Expectations, 21(6), 1104–1110. https://doi.org/10.1111/hex.12807

31.

Treacy

Martin

Samarutilake

Van Bortel

(2021). Patient and public involvement (PPI) in prisons: The involvement of people living in prison in the research process – a systematic scoping review. Health & Justice, 9(1), 30. https://doi.org/10.1186/s40352-021-00154-6

32.

Vanstone

Canfield

Evans

Leslie

Levasseur

M. A.

MacNeil

Pahwa

Panday

Rowland

Taneja

Tripp

You

Abelson

(2023). Towards conceptualizing patients as partners in health systems: A systematic review and descriptive synthesis. Health Research Policy and Systems, 21(1), 12. https://doi.org/10.1186/s12961-022-00954-848. https://doi.org/10.1186/s40900-021-00284-z

33.

Völlm

Foster

Bates

Huband

(2017). How best to engage users of forensic services in research: Literature review and recommendations. International Journal of Forensic Mental Health, 16(2), 183–195. https://doi.org/10.1080/14999013.2016.1255282

34.

Walker

Barone

A. H.

(2025). Lived experience: From intention to global action. The British Medical Journal, 390, r1228. https://doi.org/10.1136/bmj.r1228

35.

Wennerstrom

Springgate

B. F.

Jones

Meyers

Henderson

Brown

Niyogi

Martin

Smith

Kirkland

A. L.

Jones

Norris

K. C.

(2018). Lessons on patient and stakeholder engagement strategies for pipeline to proposal awards. Ethnicity & Disease, 28(2), 303–310. https://doi.org/10.18865/ed.28.S2.303

36.

Woodall

Dixey

South

(2013). Control and choice in English prisons: Developing health-promoting prisons. Health Promotion International, 29(3), 474–482. https://doi.org/10.1093/heapro/dat019

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Exploring the Experiences of Lived-Experience and Staff Researchers Collaborating on a Forensic Mental Health Research Project

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