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Review Articles

Conducting Patient Oriented Research (POR) in a Forensic Psychiatric Facility: A Case Study of Patient Involvement

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References

  • Thomas, G. (2011). A Typology for the case study in social science following a review of definition, discourse and structure. Qualitative Inquiry, 17(6), 511–521. https://doi.org/10.1177/1077800411409884
  • Adelugba, O., Mela, M., & Haq, I. (2016). Psychotropic medication refusal: Reasons and patients' perception at a secure forensic psychiatric treatment centre. Journal of Forensic Science and Medicine, 2(1), 12. https://doi.org/10.4103/2349-5014.175614
  • Allen, M., Salsberg, J., Knot, M., LeMaster, J., Felzien, M., Westfall, J., Herbert, C., Vickery, K., Culhane-Pera, K., Ramsden, V., Zittleman, L., Martin, R., & Macaulay, A. (2017). Engaging with communities, engaging with patients: Amendment to the NAPCRG 1998 Policy Statement on Responsible Research with Communities. Family Practice, 34(3), 313–321. https://doi.org/10.1093/fampra/cmw074
  • Beresford, P. (2007). User involvement, research and health inequalities: Developing new directions. Health & Social Care in the Community, 15(4), 306–312. https://doi.org/10.1111/j.1365-2524.2007.00688.x
  • Boivin, A., Lehoux, P., Lacombe, R., Burgers, J., & Grol, R. (2014). Involving patients in setting priorities for healthcare improvement: A cluster randomized trial. Implementation Science, 9(1) https://doi.org/10.1186/1748-5908-9-24
  • Bombard, Y., Baker, G., Orlando, E., Fancott, C., Bhatia, P., Casalino, S., Onate, K., Denis, J., & Pomey, M. (2018). Engaging patients to improve quality of care: A systematic review. Implementation Science, 13(1), 1–22. https://doi.org/10.1186/s13012-018-0784-z
  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
  • Braun, V., & Clarke, V. (2013). Successful qualitative research: A practical guide for beginners. SAGE Publications.
  • Brown, J., & Isaacs, D. (2005). The world café: Shaping our futures through conversations that matter. Berrett-Koehler Publishers.
  • Budgell, B. (2008). Guidelines to the writing of case studies. The Journal of the Canadian Chiropractic Association, 52(4), 199–204.
  • Canadian Institutes of Health Research. (2014, January 9). Strategy for patient-oriented research: Patient engagement framework. http://www.cihr-irsc.gc.ca/e/48413.html
  • Canadian Institutes of Health Research. (2021, November 1). Strategy for patient-oriented research. https://cihr-irsc.gc.ca/e/41204.html
  • Cawston, P. G., & Barbour, R. S. (2003). Clients or citizens? Some considerations for primary care organisations. The British Journal of General Practice: The Journal of the Royal College of General Practitioners, 53(494), 716–722.
  • Domecq, J. P., Prutsky, G., Elraiyah, T., Wang, Z., Nabhan, M., Shippee, N., Brito, J. P., Boehmer, K., Hasan, R., Firwana, B., Erwin, P., Eton, D., Sloan, J., Montori, V., Asi, N., Dabrh, A. M. A., & Murad, M. H. (2014). Patient engagement in research: A systematic review. BMC Health Services Research, 14, 89. https://doi.org/10.1186/1472-6963-14-89
  • Drennan, G., & Alred, D. (2013). Recovery in forensic mental health settings. In G. Drennan & D. Alred (Eds.), Secure recovery: Approaches to recovery in forensic mental health settings (pp. 1–22). Willan. https://doi.org/10.4324/9780203129173
  • First Nations Information Governance Centre (FNIGC). (2014). Ownership, control, access and possession (OCAPTM): The path to first nations information governance. The First Nations Information Governance Centre.
  • Fisher, A., & Hatton, D. (2010). A study of women prisoners' use of co-payments for health care: Issues of access. Women's Health Issues : Official Publication of the Jacobs Institute of Women's Health, 20(3), 185–192. https://doi.org/10.1016/j.whi.2010.01.005
  • Flyvbjerg, B. (2006). Five misunderstandings about case-study research. Qualitative Inquiry, 12(2), 219–245. https://doi.org/10.1177/1077800405284363
  • Friesen, P., Lignou, S., Sheehan, M., & Singh, I. (2021). Measuring the impact of participatory research in psychiatry: How the search for epistemic justifications obscures ethical considerations. Health Expectations, 24(S1), 54–61. https://doi.org/10.1111/hex.12988
  • Frisch, N., Atherton, P., Doyle-Waters, M., MacLeod, M., Mallidou, A., Sheane, V., Ward, J., & Woodley, J. (2020). Patient-oriented research competencies in health (PORCH) for researchers, patients, healthcare providers, and decision-makers: Results of a scoping review. Research Involvement and Engagement, 6(4), 4–14.
  • Gaikwad, P. (2018). Including rigor and artistry in case study as a strategic qualitative methodology. The Qualitative Report, 22(13), 3431–3446. https://doi.org/10.46743/2160-3715/2017.3436
  • Giovannoni, M. (2020). All my relations: Patient oriented research for reconciliation and empowerment of Indigenous women’s experiences with cervical screening [Master’s thesis, University of British Columbia]. UBC Theses and Dissertations.
  • Godin, P., Davies, J., Heyman, B., Reynolds, L., Simpson, A., & Floyd, M. (2007). Opening communicative space: A Habermasian understanding of a user-led participatory research project. Journal of Forensic Psychiatry & Psychology, 18(4), 452–469. https://doi.org/10.1080/14789940701470283
  • Government of Canada. (2018, September 23). TCPS 2 (2018) - Chapter 9: Research involving the First Nations, Inuit, and Metis peoples of Canada. https://ethics.gc.ca/eng/tcps2-eptc2_2018_chapter9-chapitre9.html
  • Green, T., Batson, A., & Gudjonsson, G. (2011). The development and initial validation of a service-user led measure for recovery of mentally disordered offenders. Journal of Forensic Psychiatry & Psychology, 22(2), 252–265. https://doi.org/10.1080/14789949.2010.541271
  • Hall, L., Dell, C. A., Fornssler, B., Hopkins, C., Mushquash, C., & Rowan, M. (2015). Research as cultural renewal: Applying two-eyed seeing in a research project about cultural interventions in First Nations addictions treatment. International Indigenous Policy Journal, 6(2), 1–15. https://doi.org/10.18584/iipj.2015.6.2.4
  • Hatton, D., & Fisher, A. (2011). Using participatory methods to examine policy and women prisoners' health. Policy, Politics & Nursing Practice, 12(2), 119–125. https://doi.org/10.1177/1527154411412384
  • Hovén, E., Eriksson, L., Månsson D'Souza, Å., Sörensen, J., Hill, D., Viklund, C., Wettergren, L., & Lampic, C. (2020). What makes it work? Exploring experiences of patient research partners and researchers involved in a long-term co-creative research collaboration. Research Involvement and Engagement, 6(33), 33–12. https://doi.org/10.1186/s40900-020-00207-4
  • Keller, M., Plishka, C., King, M., Gunderson, J., Stobart, C. A., Dunn, K., & Haver, C. R. A. (2020). The creation of a tool to measure engagement in patient-oriented research. Healthc Q, 23(1), 34–38. https://doi.org/10.12927/hcq.2020.26141. PMID: 32249737.
  • Israel, B. A., Schultz, A. J., & Becker, A. B. (2018). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173–202. https://doi.org/10.1146/annurev.publhealth.19.1.173.
  • Kemmis, S., & McTaggart, R. (2005). Participatory action research: Communicative action and the public sphere. In N. K. Denzin & Y. S. Lincoln (Eds.), The Sage handbook of qualitative research (pp. 559–603). Sage Publications Ltd.
  • Kendall, C., Fitzgerald, M., Kang, R. S., Wong, S. T., Katz, A., Fortin, M., Dionne, E., Kuluski, K., O'Brien, M. A., Ploeg, J., Crowe, L., & Liddy, C. (2018). Still learning and evolving in our approaches”: Patient and stakeholder engagement among Canadian community-based primary health care researchers. Research Involvement and Engagement, 4, 47. https://doi.org/10.1186/s40900-018-0132-0
  • Livingston, J., & Rossiter, K. (2011). Stigma as perceived and experienced by people with mental illness who receive compulsory community treatment: A qualitative study. Stigma Research and Action, 1(2), 1–8. https://doi.org/10.5463/SRA.v1i1.1
  • Livingston, J., Nijdam-Jones, A., & Brink, J. (2012). A tale of two cultures: Examining patient-centered care in a forensic mental health hospital. The Journal of Forensic Psychiatry & Psychology, 23(3), 345–360. https://doi.org/10.1080/14789949.2012.668214
  • Livingston, J., Nijdam-Jones, A., Lapsley, S., Calderwood, C., & Brink, J. (2013). 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. https://doi.org/10.1177/1078390313489730
  • Livingston, J., Rossiter, K., & Verdun-Jones, S. (2011). 'Forensic' labelling: An empirical assessment of its effects on self-stigma for people with severe mental illness . Psychiatry Research, 188(1), 115–122. https://doi.org/10.1016/j.psychres.2011.01.018
  • Lux, M. (2001). Medicine that walks: Disease, medicine and Canadian Plains Native People 1880–1940. University of Toronto Press.
  • Mallidou, A., Frisch, N., Doyle-Waters, M., MacLeod, M., Ward, J., & Atherton, P. (2018). Patient-oriented research competencies in health (PORCH) for patients, healthcare providers, decision-makers and researchers: Protocol of a scoping review. Systematic Reviews, 7(1), 101–110. https://doi.org/10.1186/s13643-018-0762-1
  • Manafo, E., Petermann, L., Mason-Lai, P., & Vandall-Walker, V. (2018). Patient engagement in Canada: A scoping review of the “ 'how' and 'what' of patient engagement in health research” “” . Health Research Policy and Systems, 16(1), 5. https://doi.org/10.1186/s12961-018-0282-4
  • Marsh, S., Russell, K., & Evans, W. (2021). Trickle down registration: Exploring the lived experiences of partners of persons registered as a sexual offender. Health Communication, 18, 1–6. https://doi.org/10.1080/10410236.2021.1888455
  • Martin, R., Murphy, K., Chan, R., Ramsden, V., Granger-Brown, A., Macaulay, A., Kahlon, R., Ogilvie, G., & Hislop, T. (2009a). Primary health care: Applying the principles within a community-based participatory health research project that began in a Canadian women's prison. Global Health Promotion, 16(4), 43–53. https://doi.org/10.1177/1757975909348114
  • Martin, R., Murphy, K., Hanson, D., Hemingway, C., Ramsden, V., Buxton, J., Granger-Brown, A., Condello, L., Buchanan, M., Espinoza-Magana, N., Edworthy, G., & Hislop, T. (2009b). The development of participatory health research among incarcerated women in a Canadian prison. International Journal of Prisoner Health, 5(2), 95–107. https://doi.org/10.1080/17449200902884021
  • McKenna, B., Furness, T., Dhital, D., Park, M., & Connally, F. (2014). The transformation from custodial to recovery-oriented care: A paradigm shift that needed to happen. Journal of Forensic Nursing, 10(4), 226–233.
  • McKeown, M., Jones, F., Wright, K., Spandler, H., Wright, J., Fletcher, J., Duxbury, J., McVittie, J., Turton, S., & Turton, W. (2014). It’s the talk: A study of involvement initiatives in secure mental health settings. Health Expectations, 19, 570–579. https://doi.org/10.1111/hex.12232
  • Mela, M., Marcoux, E., Baetz, M., Griffin, R., Angelski, C., & Deqiang, G. (2008). The effect of religiosity and spirituality on psychological well-being among forensic psychiatric patients in Canada. Mental Health, Religion and Culture, 11(5), 517–532. https://doi.org/10.1080/13674670701584847
  • Miles, R. (2015). Complexity, representation and practice: Case study as method and methodology. Issues in Educational Research, 25(3), 309–318.
  • Neil, C. E. (2012). Prisoner or patient. The challenges within forensic health services. Scottish Universities Medical Journal, 1(2), 119–122. http://sumj.dundee.ac.uk/data/uploads/volume2/sumjv1i2p.119-122.pdf
  • Nicholaichuk, T., Gordon, A., Gu, D., & Wong, S. (2000). Outcome of an institutional sexual offender treatment program: A comparison between treated and matched untreated offenders. Sexual Abuse, 12(2), 139–153. https://doi.org/10.1177/107906320001200205
  • Noorani, T. (2013). Service user involvement, authority and the ‘ex- pert-by-experience’ in mental health. Journal of Political Power, 6(1), 49–68. https://doi.org/10.1080/2158379X.2013.774979
  • Perez, L., & Treadwell, H. (2009). Determining what we stand for will guide what we do: Community priorities, ethical research paradigms, and research with vulnerable populations. American Journal of Public Health, 99(2), 201–204. https://doi.org/10.2105/AJPH.2008.125617
  • Poulin, P., Shergill, Y., Romanow, H., Busse, J., Chambers, C., Cooper, L., Forgeron, P., Harper, A., Hudspith, M., Iorio, A., Lalloo, C., Ouellette, C., Robertson, R., Smeenk, S., Stevens, B., & Stinson, J. (2018). Researching what matters to improve chronic pain care in Canada: A priority-setting partnership process to support patient-oriented research. Canadian Journal of Pain = Revue Canadienne de la Douleur, 2(1), 191–204. https://doi.org/10.1080/24740527.2018.1433959
  • Pouncey, C., & Lukens, J. (2010). Madness versus badness: The ethical tension between the recovery movement and forensic psychiatry. Theoretical Medicine and Bioethics, 31(1), 93–105. https://doi.org/10.1007/s11017-010-9138-9
  • Poureslami, I., Pakhale, S., Lavoie, K., Gupta, S., Bacon, S., Aaron, S., To, T., Boulet, L., & FitzGerald, J. (2018). Patients as research partners in chronic obstructive pulmonary disease and asthma research: Priorities, challenges and recommendations from asthma and COPD patients. Canadian Journal of Respiratory, Critical Care, and Sleep Medicine, 2(3), 138–146. https://doi.org/10.1080/24745332.2018.1443294
  • Ramsden, V., Martin, R., McMillan, J., Granger-Brown, A., & Tole, B. (2015). Participatory health research within a prison setting: A qualitative analysis of 'Paragraphs of passion'. Global Health Promotion, 22(4), 48–55. https://doi.org/10.1177/1757975914547922
  • Razack, S. (2015). Dying from improvement: Inquests and inquiries into Indigenous deaths in custody. University of Toronto Press.
  • Rich, R. (2016). Health system performance measurement in a circumpolar context: Selecting performance indicators for maternity care [Master’s thesis, University of Toronto]. TSpace.
  • Rolfe, D., Ramsden, V., Banner, D., & Graham, I. (2018). Using qualitative health research methods to improve patient and public involvement and engagement in research. Research Involvement and Engagement, 4(1), 1–8. https://doi.org/10.1186/s40900-018-0129-8
  • Rutter, D., Manley, C., Weaver, T., Crawford, M. J., & Fulop, N. (2004). Patients or partners? Case studies of user involvement in the planning and delivery of adult mental health services in London. Social Science & Medicine (1982), 58(10), 1973–1984. https://doi.org/10.1016/S0277-9536(03)00401-5
  • Saskatchewan Centre for Patient-Oriented Research. (2019). Patient-oriented research project planning tool. https://www.scpor.ca/patient-engagement-planning-tool
  • Saskatchewan Centre for Patient-Oriented Research. (2021). Indigenous research level of engagement tool. https://static1.squarespace.com/static/5c869fd0e666695abe893b3b/t/60b12ece87eada3a306a19a0/1622224590757/Branded+IRLET_final.pdf
  • Shimmin, C., Wittmeier, K., Lavoie, J., Wicklund, E., & Sibley, K. (2017). Moving towards a more inclusive patient and public involvement in health research paradigm: The incorporation of a trauma-informed intersectional analysis. BMC Health Services Research, 17(1), 539–510. https://doi.org/10.1186/s12913-017-2463-1
  • Simons, H. (2009). Case study research in practice. SAGE.
  • Simpson, A., & Penney, S. (2011). The recovery paradigm in forensic mental health services. Criminal Behaviour and Mental Health : CBMH, 21(5), 299–306. https://doi.org/10.1002/cbm.823
  • Smith, L. (2012). Decolonizing methodologies: Research and Indigenous peoples (2nd ed.). Zed Books.
  • Stake, R. (2005). Qualitative case studies. In: N. K. Denzin and Y. S. Lincoln (Eds.), The SAGE handbook of qualitative research (3rd ed., pp.443–466). Sage.
  • Strom, B., Norman, S., & Margolis, D. (2000). Patient-oriented research: Definitions and new paradigms. The American Journal of Medicine, 109(2), 164–165. https://doi.org/10.1016/S0002-9343(00)00502-7
  • Sturman, A. (1997). Case study methods. In: J. P. Keeves (Ed.), Educational research, methodology and measurement: An international handbook (2nd ed., pp.61–66). Pergamon.
  • Sunderji, N., Angl, E. N., Polaha, J., & Gao, C. (2019). Why and how to use patient-oriented research to promote translational research. Families, Systems & Health : The Journal of Collaborative Family Healthcare, 37(1), 1–9.
  • Tan, S., & Brown, J. (2005). The world café in Singapore: Creating a learning culture through dialogue. The Journal of Applied Behavioral Science, 41(1), 83–90. https://doi.org/10.1177/0021886304272851
  • Völlm, B., Foster, S., Bates, P., & Huband, N. (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
  • Völlm, B., Edworthy, R., Holley, J., Talbot, E., Majid, S., Duggan, C., Weaver, T., & McDonald, R. (2017). A mixed-methods study exploring the characteristics and needs of long-stay patients in high and medium secure settings in England: Implications for service organisation. Southampton (UK): NIHR Journals Library; PMID: 28263522.
  • Waldram, J. (2004). Revenge of the Windigo – The construction of the mind and mental health of North American Aboriginal peoples. University of Toronto Press.
  • Wharewera-Mika, J., Cooper, E., Wiki, N., Prentice, K., Field, T., Cavney, J., Kaire, D., & McKenna, B. (2020). The appropriateness of DUNDRUM-3 and DUNDRUM-4 for Māori in forensic mental health services in New Zealand: Participatory action research. BMC Psychiatry, 20(1), 61. https://doi.org/10.1186/s12888-020-2468-x
  • Wilson, S. (2008). Research is ceremony: Indigenous research methods. Fernwood Publishing.
  • Wright, D., Gordon, R., Carr, D., Craig, J., Banks, E., Muthayya, S., Wutzke, S., Eades, S., & Redman, S. (2016). The Study of Environment on Aboriginal Resilience and Child Health (SEARCH): A long-term platform for closing the gap. Public Health Research & Practice, 26(3), e2631635. https://doi.org/10.17061/phrp2631635
  • Young, N., & Wabano, M. (2018). Beyond the patient: Lessons from community engagement in a rural first nation. CMAJ : Canadian Medical Association Journal = Journal de L'Association Medicale Canadienne, 190(Suppl), S16–S18. https://doi.org/10.1503/cmaj.180381
  • Zainal, Z. (2007). Case study as a research method. Jurnal Kemanusiaan, 5(1), 1–6.

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