This rapid review summarises the currently available information on how best to engage users of forensic mental health services in the research process. A search of six electronic databases and a general Internet search identified eleven peer-reviewed journal papers and twelve reports, the majority containing information derived using qualitative methods. Five areas of particular relevance to forensic settings were identified: power relations & vulnerability issues (including ethical treatment; informed consent; attitudes of staff and other service users); practical difficulties; confidentiality and transparency; language and communication and training issues. Recommendations on engaging service users in forensic mental health research are presented.
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References
1.
BanongoE.DaviesJ.GodinP.ThompsonJ.LohneisC.DenysC.SimpsonA. (2006). Engaging service users in the evaluation and development of forensic mental health care services. London, UK: City University/National Programme for Forensic Mental Health R&D.
2.
BatesP. (2010). Thinking about professional boundaries in an inclusive society. In P. Gilbert (Ed.), Social work and mental health: The value of everything (pp. 18–24). Lyme Regis, UK: Russell House.
BrettJ.StaniszewskaS.MockfordC.Herron-MarxS.HughesJ.TysallC.SulemanR. (2012). Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expectations, 17, 637–650. doi: 10.1111/j.1369-7625.2012.00795.x
5.
ByrneM. W. (2005). Conducting research as a visiting scientist in a women's prison. Journal of Professional Nursing, 21(4), 223—30. doi:10.1016/j.profnurs.2005.05.001
6.
CallardF.RoseD. (2012). The mental health strategy for Europe: why service user leadership in research is indispensable. Journal of Mental Health, 21(3), 219–126. doi: 10.3109/09638237.2011.651661.
DavidsonK. M.EspieC. J.LammieC. (2011). Conducting randomised controlled trials: finding better ways to explain research to people with anti-social personality disorder who have low literacy levels. Criminal Behaviour & Mental Health, 21(4), 265–278. doi:10.1002/cbm.811
11.
Department of Health (2001). Research governance framework for health and social care. London, UK: Department of Health.
FaulknerA.MorrisB. (2003). Expert paper: User involvement in forensic mental health research and development. Liverpool, UK: National R&D Programme on Forensic Mental Health.
14.
FaulknerA. (2004). The ethics of survivor research: Guidelines for the ethical conduct of research carried out by mental health service user and survivors. Bristol, UK: Policy Press on behalf of the Joseph Rowntree Foundation.
15.
FaulknerA. (2007). Beyond our expectation: A report of the experiences of involving service-users in forensic mental health research. Liverpool, UK: NHS National Programme on Forensic Mental Health Research and Development.
16.
GodinP.DaviesJ.HeymanB.ReynoldsL.SimpsonA.FloydM. (2007). Opening communicative space: A Habermasian understanding of a user led participatory research project. Journal of Forensic Psychiatry & Psychology, 18(4), 452–469. doi:10.1080/14789940701470283
17.
HanleyB.BradburnJ.BarnesM.EvansC.GoodareH.KelsonM.…WallcraftJ. (2004). Involving the public in NHS, public health and social care research: Briefing notes for researchers. Eastleigh, UK: INVOLVE Support Unit.
18.
INVOLVE (2009). Exploring impact: Public involvement in NHS, public health and social care research. Eastleigh, UK: Author.
19.
INVOLVE (2012a). Recruiting members of the public to get involved in research funding and commissioning processes. London, UK: INVOLVE-NIHR.
KhanguraS.KonnyuK.CushmanR.GrimshawJ.MoherD. (2012). Evidence summaries: the evolution of a rapid review approach. Systematic Reviews, 1, 10. doi: 10.1186/2046-4053-1-10
22.
LalS.AdairC.E. (2014). E-Mental Health: A rapid review of the literature. Psychiatric Services, 65(1), 24–32. doi: 10.1176/appi.ps.201300009
23.
LivingstonJ. DNijdam-JonesA.TeamP.E.E.R. (2013a). 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. doi: 10.1080/14999013.2013.763390
24.
LivingstonJ. D.Nijdam-JonesA.LapsleyS.CalderwoodC.BrinkJ. (2013b). Supporting Recovery by Improving Patient Engagement in a Forensic Mental Health Hospital: Results from a Demonstration Project. Journal of the American Psychiatric Nurses Association, 19(3), 132–145. doi: 10.1177/1078390313489730
25.
MacInnesD.BeerD.KeebleP.ReesD.ReidL. (2011). Service-user involvement in forensic mental health care research: Areas to consider when developing a collaborative study. Journal of Mental Health, 20(5), 464–472. doi:10.3109/09638231003728109
26.
MartinR.MurphyK.HansonD.HemingwayC.RamsdenV.BuxtonJ.…HislopTG. (2009). The development of participatory health research among incarcerated women in a Canadian prison. International Journal of Prisoner Health, 5(2), 95–107. doi: 10.1080/17449200902884021
27.
McKeownM.JonesF.FoyP.WrightK.PaxtonT.BlackmonM. (2016). Looking back, looking forward: Recovery journeys in a high secure hospital. International Journal of Mental Health Nursing, 25, 234–242 doi: 10.1111/inm.12204
28.
McKeownM.JonesF.WrightK.SpandlerH.WrightJ.FletcherH.TurtonW. (2014). It's the talk: a study of involvement initiatives in secure mental health settings. Health Expectations, 19, 570–579. doi: 10.1111/hex.12232
29.
Mental Health Research Network [MHRN] (2012). Good practice guidance for involving people with experience of mental health problems in research. London, UK: Mental Health Research Network/National Institute for Health Research Clinical Research Network.
O'DonnellM.EntwhistleV. (2004). Consumer involvement in decisions about what health-related research is funded. Health Policy, 70(3), 281–290. doi: 10.1016/j.healthpol.2004.04.004
33.
PatenaudeA. L. (2004). No promises, but I'm willing to listen and tell what I hear: Conducting qualitative research among prison inmates and staff. The Prison Journal, 84(4 Suppl.), 69S–91S. doi: 10.1177/0032885504269898
34.
Sainsbury Centre (2008). A review of service user involvement in prison mental health research. London, UK: Sainsbury Centre for Mental Health.
SimmonsP.HawleyC. J.GaleT. M.SivakumaranT. (2010). Service user, patient, client, user or survivor: describing recipients of mental health services. The Psychiatrist, 34(1), 20–23. doi: 10.1192/pb.bp.109.025247
37.
SpiersS.HarneyK.ChilversC. (2005). Editorial: Service user involvement in forensic mental health: Can it work?Journal of Forensic Psychiatry & Psychology, 16(2), 211–220. doi: 10.1080/14789940500098137
38.
Service User Research Group England [SURGE] (2005). Guidance for good practice: Service user involvement in the UK Mental Health Research Network. London, UK: SURGE / Mental Health Research Network. Retrieved January22, 2015 from http://www.cumbriapartnership.nhs.uk/uploads/File/SURGEGuide.pdf
39.
Service User Research Group England [SURGE] (2006). Brief guide to involving mental health service users in research. London, UK: Service User Research Group for England. Retrieved January22, 2015 from http://studymore.org.uk/surgeb.pdf
40.
StraussA.CorbinJ. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Thousand Oaks, CA: SAGE.
41.
TaitL.LesterH. (2005). Encouraging user involvement in mental health services. Advances in Psychiatric Treatment, 11(3), 168–175. doi: 10.1192/apt.11.3.168
42.
TambuyzerE.PietersG.Van AudenhoveC. (2011). Patient involvement in mental health care: one size does not fit all. Health Expectations, 17, 138–150. doi: 10.1111/j.1369-7625.2011.00743.x
43.
TriccoA. C.AntonyJ.ZarinW.StriflerL.GhassemiM.IvoryJ.StrausS. E. (2015). A scoping review of rapid review methods. BMC Medicine, 13, 224. doi: 10.1186/s12916-015-0465-6
44.
WallcraftJ.SchrankB.AmeringM. (2009). Handbook of service user involvement in mental health research. Sussex, UK: John Wiley & Sons.
45.
WattA.CameronA.SturmL.LathleanT.BabidgeW.BlameyS.MaddernG. (2008). Rapid versus full systematic reviews: validity in clinical practice?ANZ Journal of Surgery, 78, 1037–1040. doi: 10.1111/j.1445-2197.2008.04730.x
WykesT. (2003). Blue skies in the Journal of Mental Health? Consumers in research. Journal of Mental Health, 12(1), 1–6. doi:10.1080/09638230021000058247
