Towards epistemic justice doing: Examining the experiences and shifts in knowledge of lived experience researchers over the course of a mental health research training programme.

capacity building consumer participation educational activities mental health research ethics

Journal

International journal of mental health nursing
ISSN: 1447-0349
Titre abrégé: Int J Ment Health Nurs
Pays: Australia
ID NLM: 101140527

Informations de publication

Date de publication:
Dec 2021
Historique:
revised: 20 06 2021
received: 30 04 2021
accepted: 28 06 2021
pubmed: 16 7 2021
medline: 5 11 2021
entrez: 15 7 2021
Statut: ppublish

Résumé

Participation of people with lived experience (LE) in mental health research is vital for improving the quality and relevance of research priorities, outcomes, and knowledge translation. Inclusion of people with LE is also recognized as central for achieving health service reform including commitments to human rights, social, and epistemic justice. Although a lack of research training is cited as a barrier to LE participation, few studies have examined the value of training for, or the specific requirements of, people with LE. This study seeks to address this gap. It reports on a longitudinal, qualitative study examining shifts in experience and knowledge, and unmet needs, of people with LE over the course of a coproduced research training programme. Findings indicate that the programme enabled participants to understand the role, value, and levels of LE participation in research. Participants also stressed the importance of the 'embodied lived expertise' of LE researchers who co-delivered the training programme. Nonetheless, participants indicated that they felt unprepared for the challenges of working in systems where LE knowledge is subordinated, and experiences of being silenced and powerless could mirror those previously experienced in mental health services and the community. Participants indicated a need for training that provided them with the epistemic resources to render such experiences intelligible. Findings also indicate that training in participatory research is required for conventional mental health researchers, to support them to navigate power asymmetries and value LE knowledge contributions.

Identifiants

pubmed: 34263518
doi: 10.1111/inm.12910
doi:

Types de publication

Journal Article

Langues

eng

Pagination

1588-1598

Subventions

Organisme : University of New South Wales

Informations de copyright

© 2021 John Wiley & Sons Australia, Ltd.

Références

Arnstein, S.R. (1969). A ladder of citizen participation. Journal of the American Institute of Planners, 35 (4), 216-224.
Australian Health Ministers' Advisory Council (2013). A National framework for recovery-oriented mental health services: Policy and theory. Canberra: Commonwealth of Australia. [Cited on 10 June 2021]. Available from: URL: https://www.health.gov.au/sites/default/files/documents/2021/04/a-national-framework-for-recovery-oriented-mental-health-services-policy-and-theory.pdf
Beresford, P. (2020). PPI Or User Involvement: Taking stock from a service user perspective in the twenty first century. Research Involvement and Engagement, 6 (36), https://doi.org/10.1186/s40900-020-00211-8
Brett, J.o., Staniszewska, S., Mockford, C. et al. (2012). Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations, 17, 637-650.
Baum, F. (2015). The New Public Health, 4th edn. Melbourne, Australia: Oxford University Press ANZ.
Campbell, P. & Rose, D. (2010). Action for change in the UK: Thirty years of the user/survivor movement. In: D. Pilgrim, A. Rogers & B. Pescosolido (Eds). The SAGE handbook of mental health and illness (pp. 452-471). Los Angeles, CA: Sage.
Chamberlin, J. (1978). On our own: Patient-controlled alternatives to the mental health system. New York, NY: Hawthorn Books.
Collins, P. & Bilge, S. (2016). Intersectionality. Malden, MA: Polity Press.
Coombe, C. (2012). Participatory approaches to evaluating community organizing and coalition building. In M. Minnkler (Ed) Community Organizing and Community Building for Health and Welfare. Rutgers University Press, pp. 346-364.
Crenshaw, K. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 43(6), 1241-99.
Epstein, M. (2013). The Consumer Movement in Australia: A Memoir of An Old Campaigner. Our Consumer Place. Victoria, Australia: Recource Centre for Mental health Consumers.
Foucault, M. (1972). The Archaeology of Knowledge. London: Tavistok Publications Limited.
Freire, P. (1982). Creating alternative research methods: Learning to do it by doing it. In: B. Hall, A. Gilette & R. Tandon (Eds). Creating knowledge: A monopoly? (pp. 29-40). New Delhi, India: Society for Participatory Research in Asia.
Freire, P. (1970). Pedagogy of the Oppressed. New York: Herder & Herder.
Fricker, M. (2007). Epistemic Injustice: Power and the Ethics of knowing. Oxford University Press.
Glassman, M. & Erdem, G. (2014). Participatory action research and its meanings: Vivencia, praxis, conscientization. Adult Education Quarterly, 64 (3), 206-221.
Grossoehme, D. & Lipstein, E. (2016). Analysing longitudinal qualitative data: The application of trajectory and recurrent cross-sectional approaches. BMC Research Notes, 9 (136), 1-5.
Guta, A., Strike, C., Flicker, S.J., Murray, S., Upshur, R. & Myers, T. (2014). Governing through community-based research: Lessons from the Canadian HIV research sector. Social Science & Medicine, 123, 250-261.
Hancock, N., Bundy, A., Tamsett, S. & McMahon, M. (2012). Participation of mental health consumers in research: Training addressed and reliability assessed. Australian Occupational Therapy Journal, 59, 218-224.
Happell, B., Gordon, S., Bocking, J. et al. (2019). “Chipping away”: Non-consumer researcher perspectives on barriers to collaborating with consumers in mental health research. Journal of Mental Health, 28 (1), 49-55.
Happell, B. & Roper, C. (2007). Consumer participation in mental health research: Articulating a model to guide practice. The Royal Australian and New Zealand College of Psychiatrists, 15 (3), 237-241.
Happell, B. & Scholz, B. (2018). Doing what we can, but knowing our place: Being an ally to promote consumer leadership in mental health. International Journal of Mental Health Nursing, 27 (1), 440-447.
Health Consumers NSW & Research4Me (2017). Involving health consumers in health and medical research: Enablers and challenges from a consumer perspective. Health Consumers NSW and Research4Me.
INVOLVE (2012). Briefing notes for researchers: Public involvement in NHS, public health and social care research. Eastleigh: INVOLVE. Available from: URL: https://www.invo.org.uk/wp-content/uploads/2012/04/INVOLVEBriefingNotesApr2012.pdf
Jackson, A. & Mazzei, L. (2012). Thinking with Theory in Qualitative Research: Viewing Data Across Multiple Perspectives. New York: Routledge.
LeBlanc, S. & Kinsella, E. (2016). Toward epistemic justice: A critically reflexive examination of ‘sanism’ and implications for knowledge generation. Studies in Social Justice, 10 (1), 59-78.
LeFrancois, B., Menzies, R. & Reaume, G. (2013). Mad Matters: A Critical Reader in Canadian Mad Studies. Toronto: Canadian Scholars Press Inc.
MacKinnon, K.R., Guta, A., Voronka, J. et al. (2021). The political economy of peer research: Mapping the possibilities and precarities of paying people for lived experience. British Journal of Social Work, 51 (3), 888-906. https://doi.org/10.1093/bjsw/bcaa241
Marshall, S.L., Deane, F. & Hancock, N. (2010). Increasing research familiarity among members of a clubhouse for people with mental illness. Australian Journal of Rehabilitation Counselling, 16 (2), 119-125.
Martineau, J., Minyaoui, A. & Boivin, A. (2020). Partnering with patients in healthcare research: A scoping review of ethical issues, challenges, and recommendations for practice. BMC Medical Ethics, 21 (34). https://doi.org/10.1186/s12910-020-0460-0
Mjosund, N., Erikson, M., Espnes, G. et al. (2016). Service user involvement enhanced the research quality in a study using interpretive phenomenological analysis: The power of multiple perspectives. Journal of Advanced Nursing, 73, 265-278.
Morrell-Bellai, T. & Boydell, K. (1994). The experience of mental health consumers as researchers. Canadian Journal of Community Mental Health, 13 (1), 97-108.
National Institute for Health Research. (2015). Going the extra mile: Improving the nation’s health and wellbeing through public involvement in research. Available from: URL: https://www.nihr.ac.uk/documents/about-us/our-contribution-to-research/how-we-involve-patients-carers-and-the-public/Going-the-Extra-Mile.pdf
National Health and Medical Research Council (NHMRC). (2018). Guidelines for Guidelines: Consumer involvement. Available from: URL: https://www.nhmrc.gov.au/guidelinesforguidelines/plan/consumer-involvement
Palmer, P. (1998). The Courage to Teach: Exploring the Inner Landscape of a Teacher’s Life. San Francisco: Josey-Bass.
Patterson, S., Trite, J. & Weaver, T. (2014). Activity and views of service users involved in mental health research: UK survey. The British Journal of Psychiatry, 205, 68-75.
Perlin, M.L. (1992). On “sanism”. Southern Methodist University Law Review, 46, 373-407.
Roper, C., Grey, F. & Cadogan, E. (2018). Co-production: Putting principles into practice in mental health contexts. Creative Commons Attribution 3.0. Available from: URL: https://discovery.college/wp-content/uploads/2019/Coproduction_final-compressed.pdf
Russo, J. & Beresford, P. (2015). Between exclusion and colonisation: Seeking a place for mad people’s knowledge in academia. Disability and Society, 30 (1), 153-157.
Sandhu, B. (2017). The value of lived experience in social change: The need for leadership in the social sector. Creative Commons Attribution. NonCommercialChareAlike 4.0 International license.
Saunders, C., Girgis, A., Butow, P., Crossing, S. & Penman, A. (2008). From inclusion to independence: Training consumers to review research. Health Research Policy and Systems, 6 (3). https://doi.org/10.1186/1478-4505-6-3
Scholz, B., Gordon, S., Bocking, J. et al. (2019). ‘There’s just no flexibility’: How space and time impact mental health consumer research. International Journal of Mental Health Nursing, 28, 899-908.
Tomes, N. (2006). The patient as a policy factor. A historical case study of the consumer/survivor movement in mental health. Regulation and Policy, 25 (3), 720-729.
Trainor, J., Shepherd, M., Boydell, K., Leff, A. & Crawford, E. (1997). Beyond the service paradigm: The impact of consumer/survivor initiatives. Psychiatric Rehabilitation Journal, 21 (2), 132-140.
Wells, R., Barker, S., Boydell, K., Buus, N., Rhodes, P. & River, J. (2020). Dialogical inquiry: Multivocality and the interpretation of text. Qualitative Research, 7, 1-17. https://doi.org/10.1177/1468794120934409
Wright, D., Corner, J., Hopkinson, J. & Foster, C. (2006). Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda. Health Expectations, 9, 3-12.
Wylie, A. (2011). “What knowers know well: Women, work and the academy. In: H. Grasswick (Ed). Feminist epistemology and philosophy of science: Power in knowledge (pp. 157-179). Dordrecht: Springer.
Yardley, L. (2015). In: J. Smith (Ed). Demonstrating validity in qualitative research, in qualitative psychology: A practical guide to research methods (pp. 235-251). London: Sage.

Auteurs

Brett Bellingham (B)

NSW Health, Nepean Blue Mountains Mental Health Service, Sydney, New South Wales, Australia.
Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.

Holly Kemp (H)

Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
NSW Health, Canterbury Community Health Centre, Sydney, New South Wales, Australia.

Katherine Boydell (K)

Black Dog Institute, The University of New South Wales, Sydney, New South Wales, Australia.

Sophie Isobel (S)

Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.

Katherine Gill (K)

Consumer Led Research Network, The University of Sydney, Sydney, New South Wales, Australia.

Jo River (J)

Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.

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