Uncovering the emotional labour of involvement and co-production in mental health research

References

• Barnes, M. 2002. “Bringing Difference into Deliberation? Disabled People, Survivors and Local Governance.” Policy & Politics 30 (3): 319–331. doi:10.1332/030557302760094694.
   Web of Science ®Google Scholar
• Beresford, P. and Wallcraft, J. 1997. Psychiatric System Survivors and Emancipatory research: Issues, overlaps and differences. Chapter 5 in Barnes and Mercer (Eds) Doing Disability Research http://disability-studies.leeds.ac.uk/files/library/Barnes-Chapter-5.pdf.
   Google Scholar
• Beresford, P. 2010. “Re-Examining Relationships between Experience, Knowledge, Ideas and Research: A Key Role for Recipients of State Welfare and Their Movements.” Social Work and Society International Online Journal 8 (1): 6–21.
   Google Scholar
• Brett, J., S. Staniszewska, C. Mockford, S. Herron-Marx, J. Hughes, C. Tysall, and R. Suleman. 2014. “A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities.” The Patient - Patient-Centered Outcomes Research 7 (4): 387–395. doi:10.1007/s40271-014-0065-0.
   Web of Science ®Google Scholar
• Carr, S. 2007. “Participation, Power, Conflict and Change: Theorizing Dynamics of Service User Participation in the Social Care System of England and Wales.” Critical Social Policy 27 (2): 266–276. doi:10.1177/0261018306075717.
   Web of Science ®Google Scholar
• Carr, S. 2019. “I Am Not Your Nutter’: A Personal Reflection on Commodification and Comradeship in Service User and Survivor Research Disability and Society.” Disability and Society 34(7-8): 1140–1153.
   Google Scholar
• Davies, S. 2009. Foreword. In Exploring Impact: Public Involvement in NHS, Public Health and Social Care Research, edited by K. Staley, p. 4. Eastleigh: INVOLVE.
   Google Scholar
• Fabris, E. 2016. “Chapter 11 - Community Treatment Orders: Once a Rosy Deinstitutional Notion.” In Searching for a Rose Garden: Challenging Psychiatry, Fostering Mad Studies, edited by J. Russo and A. Sweeney. Monmouth:PCCS Books.
   Google Scholar
• Faulkner, A. 2004a. The Ethics of Survivor Research: Guidelines for the Ethical Conduct of Research Carried out by Mental Health Service Users and Survivors. Bristol: Policy Press on behalf of the Joseph Rowntree Foundation.
   Google Scholar
• Faulkner, A. 2004b. Capturing the Experiences of Those Involved in the TRUE Project: A Story of Colliding Worlds. Report to INVOLVE. www.invo.org.uk.
   Google Scholar
• Faulkner, A. 2017. Survivor research and Mad Studies: the role and value of experiential knowledge in mental health research, Disability & Society, 32:4, 500-520. doi:10.1080/09687599.2017.1302320.
   Google Scholar
• Faulkner, A., K. Pieroudis, and P. Fleischmann. Unpublished. Public Involvement in Social Care Research: Final Report to NIHR INVOLVE. Social Care Institute for Excellence.
   Google Scholar
• Hanley, B, et al. 2004. Involving the Public in NHS, Public Health, and Social Care Research: Briefing Notes for Researchers. 2nd ed.Eastleigh: INVOLVE.
   Google Scholar
• Hutchinson, A., and A. Lovell. 2013. “Participatory Action Research: Moving beyond the Mental Health ‘Service User’ Identity.” Journal of Psychiatric and Mental Health Nursing 20 (7): 641–649. doi:10.1111/jpm.12001.
   PubMed Web of Science ®Google Scholar
• Jones, N., and R. L. Brown. 2013. “The Absence of Psychiatric C/S/X Perspectives in Academic Discourse: Consequences and Implications.” Disability Studies Quarterly 33 (1): 1–10.
   Google Scholar
• Jones, N., and T. Kelly. 2015. “Chapter 3 - Inconvenient Complications: On the Heterogeneities of Madness and Their Relationship to Disability.” In Madness, Distress and the Politics of Disablement, edited by H. Spandler, J. Anderson, and B. Sapey. London: Policy Press.
   Google Scholar
• Jones, N., J. Harrison, R. Aguiar, and L. Munro. 2014. “Chapter 17 - Transforming Research for Transformative Change in Mental Health: Towards the Future.” In Community Psychology and Community Mental Health: Towards Transformative Change, edited by G. Nelson, B. Kloos, and J. Ornelas, 351–372. Oxford:Oxford University Press.
   Google Scholar
• Kalathil, J. 2013. “Hard to Reach”? Racialised groups and mental health service user involvement. Chapter Nine in Staddon, P. Mental health service users in research. pp. 121–134.
   Google Scholar
• Kalathil, J., and N. Jones. 2016. “Unsettling Disciplines: Madness, Identity, Research, Knowledge.” Philosophy, Psychiatry, & Psychology 23 (3–4): 183–188. doi:10.1353/ppp.2016.0016.
   Web of Science ®Google Scholar
• Lewis, L. 2009. Politics of Recognition: What Can a Human Rights Perspective Contribute to Understanding Users’ Experiences of Involvement in Mental Health Services? Social Policy and Society, 8(2), 257-274. doi:10.1017/S1474746408004776.
   Google Scholar
• Lewis, L. 2012. “‘It’s People’s Whole Lives’: Gender, Class and the Emotion Work of User Involvement in Mental Health Services.” Gender, Work and Organization 19 (3):276–305.
   Web of Science ®Google Scholar
• Lushey, C. 2017. ‘Peer Research Methodology: Challenges and Solutions’ [online]. SAGE Research Methods Cases. https://doi.org/10.4135/9781473994614.
   Google Scholar
• Mancini, M. A., and H. A. Lawson. 2009. “Facilitating Positive Emotional Labor in Peer-Providers of Mental Health Services.” Administration in Social Work 33 (1): 3–22. doi:10.1080/03643100802508619.
   Web of Science ®Google Scholar
• Martínez-Iñigo, D. Totterdell, P., Alcover, CM & Holman, D. 2007. Emotional labour and emotional exhaustion: Interpersonal and intrapersonal mechanisms, Work & Stress, 21:1, 30-47, doi:10.1080/02678370701234274.
   Google Scholar
• National Institute for Health Research. 2015. Going the Extra Mile: Improving the Nation’s Health and Wellbeing through Public Involvement in Research. London: NIHR.
   Google Scholar
• Oliver, K., A. Kothari, and N. Mays. 2019. “The Dark Side of Coproduction: Do the Costs Outweigh the Benefits for Health Research.” Health Research Policy and Systems 17 (1): 33. doi:10.1186/s12961-019-0432-3.
   PubMed Web of Science ®Google Scholar
• Patterson, S., J. Trite, and T. Weaver. 2014. “Activity and Views of Service Users Involved in Mental Health Research: UK Survey.” British Journal of Psychiatry 205 (1): 68–75. doi:10.1192/bjp.bp.113.128637.
   PubMed Web of Science ®Google Scholar
• Pollard and Evans. 2013. Theorising service user involvement from a researcher perspective. Chapter Four in Staddon, P. (ed) Mental Health Service Users in Research, Bristol: Policy Press.
   Google Scholar
• Ritchie, J., and L. Spencer. 2002. “Qualitative Data Analysis for Applied Policy Research.” In The Qualitative Researcher’s Companion, edited by A. Michael Huberman and Matthew B. Miles. Sage Research Methods. London: Sage Publications, Inc.
   Google Scholar
• Rose, D. 2003a. Having a Diagnosis is a Qualification for the Job, British Medical Journal, 326(7402): 1331.
   Google Scholar
• Rose, D. 2003b. ‘Collaborative research between users and professionals: Peaks and pitfalls’, The Psychiatric Bulletin (United Kingdom), vol. 27, no. 11, pp. 404–406.
   Google Scholar
• Rose, D. 2004. “Telling Different Stories: User Involvement in Mental Health Research.” Research and Policy Planning 22 (2): 23–30.
   Google Scholar
• Rose, D. 2009. “Chap. 4 - Survivor-Produced Knowledge.” In This is Survivor Research, edited by A. Sweeney, P. Beresford, A. Faulkner, M. Nettle, and D. Rose, 38–43. Ross-on-Wye: PCCS Books.
   Google Scholar
• Rose, D. 2014. “Patient and Public Involvement in Health Research: Ethical Imperative and/or Radical Challenge?” Journal of Health Psychology 19 (1): 149–158. doi:10.1177/1359105313500249.
   PubMed Web of Science ®Google Scholar
• Rose, D. 2015. “The Contemporary State of Service-User-Led Research.” The Lancet. Psychiatry 2 (11): 959–960. doi:10.1016/S2215-0366(15)00435-6.
   PubMed Web of Science ®Google Scholar
• Rose, D., S. Carr, and P. Beresford. 2018. “Widening Cross-Disciplinary Research for Mental Health’: What Is Missing from the Research Councils UK Mental Health Agenda?” Disability & Society 33 (3): 476–481. doi:10.1080/09687599.2018.1423907.
   Web of Science ®Google Scholar
• Russo, J. 2012. “Survivor-Controlled Research: A New Foundation for Thinking about Psychiatry and Mental Health.” Forum: Qualitative Social Research 13 (1): 8. http://nbnresolving.de/urn:nbn:de:0114-fqs120187.
   Google Scholar
• Russo, J., and P. Beresford. 2015. “Between Exclusion and Colonisation: Seeking a Place for Mad People’s Knowledge in Academia.” Disability & Society 30 (1): 153–157. doi:10.1080/09687599.2014.957925.
   Web of Science ®Google Scholar
• Shilliam, R. 2014. Black Academia in Britain. https://blogs.lse.ac.uk/equityDiversityInclusion/2014/08/black-academia-in-britain/.
   Google Scholar
• Srivastava, A., and S. B. Thomson. 2009. “Framework Analysis: A Qualitative Methodology for.” Applied Policy Research. JOAAG 4 (2). www.researchgate.net/publication/267678963_Framework_Analysis_A_Qualitative_Methodology_for_Applied_Policy_Research. Accessed May 2021.
   Google Scholar
• Staley, K. 2009. Exploring Impact: Public Involvement in NHS, Public Health and Social Care Research. Eastleigh: INVOLVE.
   Google Scholar
• Sweeney, A. 2013. Sociology and survivor research: an introduction. Chapter One in: Staddon, P. (Ed.) Mental Health Service Users in Research. Bristol: Policy Press.
   Google Scholar
• Sweeney, A. 2016. “Why Mad Studies Needs Survivor Research and Survivor Research Needs Mad Studies.” Intersectionalities: A Global Journal of Social Work Analysis, Research, Polity and Practice. Special Issue: Mad Studies: Intersections with Disability Studies, Social Work and ‘Mental Health 5 (3): 36–61.
   Google Scholar
• The PARTNERS2 writing collective. 2020. “Exploring patient and public involvement (PPI) and co-production approaches in mental health research: Learning from the PARTNERS2 research programme.” Research Involvement and Engagement 6: 56. doi:10.1186/s40900-020-00224-3.
   Google Scholar
• Voronka, J. 2017. “Turning Mad Knowledge into Affective Labor: The Case of the Peer Support Worker.” American Quarterly 69 (2): 333–338. doi:10.1353/aq.2017.0029.
   Web of Science ®Google Scholar
• Wallcraft, J. 2009. From activist to researcher and part-way back. Chapter 13 in Sweeney et al (2009). This is Survivor Research, pp.132–139. Ross-on-Wye: PCCS Books.
   Google Scholar
• Watson, E. 2017. “The Mechanisms Underpinning Peer Support: A Literature Review.” Journal of Mental Health: 28(6): 677-688. 
   PubMed Web of Science ®Google Scholar
• Wellcome. 2020. What Researchers Think About the Culture They Work in. London: Wellcome Trust/Shift Learning. https://wellcome.ac.uk/reports/what-researchers-think-about-research-culture.
   Google Scholar
• Williams, Oli, Sophie Sarre, Stan Constantina Papoulias, Sarah Knowles, Glenn Robert, Peter Beresford, Diana Rose, Sarah Carr, Meerat Kaur, and Victoria J. Palmer. 2020. “Lost in the Shadows: Reflections on the Dark Side of Co-production.” Health Research Policy and Systems 18 (1): 43. doi:10.1186/s12961-020-00558-0.
   PubMed Web of Science ®Google Scholar