How much ‘lived experience’ is enough? Understanding mental health lived experience work from a management perspective
Helena Roennfeldt A B C and Louise Byrne A BA Central Queensland University, School of Nursing, Midwifery and Social Sciences, 700 Yaamba Road, Norman Gardens, Qld 4701, Australia.
B Present address: RMIT University, School of Management, 124 La Trobe Street, Melbourne, Vic. 3000, Australia. Email: louise.byrne3@rmit.edu.au
C Corresponding author. Email: helena.roennfeldt@rmit.edu.au
Australian Health Review 44(6) 898-903 https://doi.org/10.1071/AH19261
Submitted: 25 November 2019 Accepted: 15 February 2020 Published: 5 August 2020
Abstract
Objective The aim of this study was to explore management understanding of the lived experience required for designated lived experience or peer roles within mental health.
Method This qualitative study used semi-structured interviews and one focus group with 29 participants employed in diverse management roles from the public and not-for-profit health and community sector in Queensland, Australia.
Results The findings indicate a lack of consensus in defining ‘lived experience’, including what lived experience is required to be eligible for designated roles. Although some participants were clear on what designated roles added to the workforce, uncertainty and attempts to avoid stigma led to some participants questioning the need for designated roles.
Conclusion This study suggests the ongoing expansion of the lived experience workforce is affected by challenges in defining ‘lived experience’ as a requirement for designated roles and fears regarding stigmatised identities.
What is known about the topic? In the mental health sector, opportunities and challenges exist in attempting to effectively incorporate the emerging lived experience or peer workforce. Research has highlighted the need for support from senior management, the need for role clarity and the risk of ‘othering’ for the lived experience workforce.
What does this paper add? This paper responds to the gap in existing research on the experiences of management in defining and articulating their understanding of lived experience and potential impact of uncertainty and inconsistency in understanding for the lived experience workforce.
What are the implications for practitioners? This study identifies the need to strengthen management understanding of lived experience to facilitate ongoing development of lived experience roles.
Additional keywords: identity, mental health services, peer work, stigma.
References
[1] Repper J, Carter T. A review of the literature on peer support in mental health services. J Ment Health 2011; 20 392–411.| A review of the literature on peer support in mental health services.Crossref | GoogleScholarGoogle Scholar | 21770786PubMed |
[2] Salzer MS, Schwenk E, Brusilovskiy E. Certified peer specialist roles and activities: results from a national survey. Psychiatr Serv 2010; 61 520–3.
| Certified peer specialist roles and activities: results from a national survey.Crossref | GoogleScholarGoogle Scholar | 20439376PubMed |
[3] Daniels AS, Bergeson S, Myrick KJ. Defining peer roles and status among community health workers and peer support specialists in integrated systems of care. Psychiatr Serv 2017; 68 1296–8.
| Defining peer roles and status among community health workers and peer support specialists in integrated systems of care.Crossref | GoogleScholarGoogle Scholar | 28712350PubMed |
[4] Chinman M, George P, Dougherty RH, Daniels AS, Ghose SS, Swift A, Delphin-Rittmon ME. Peer support services for individuals with serious mental illnesses: assessing the evidence. Psychiatr Serv 2014; 65 429–41.
| Peer support services for individuals with serious mental illnesses: assessing the evidence.Crossref | GoogleScholarGoogle Scholar | 24549400PubMed |
[5] Chapman S, Blash L, Chan K, Mayer K, Kogler V, Spetz J. Education, certification, and roles of peer providers: lessons from four states. San Francisco: UCSF Health Workforce Research Center on Long-Term Care; 2015.
[6] Scholz B, Bocking J, Happell B. Improving exchange with consumers within mental health organizations: recognizing mental ill health experience as a ‘sneaky, special degree’. Int J Ment Health Nurs 2018; 27 227–35.
| Improving exchange with consumers within mental health organizations: recognizing mental ill health experience as a ‘sneaky, special degree’.Crossref | GoogleScholarGoogle Scholar | 28145617PubMed |
[7] Voronka J. Turning mad knowledge into affective labor: the case of the peer support worker. Am Q 2017; 69 333–8.
| Turning mad knowledge into affective labor: the case of the peer support worker.Crossref | GoogleScholarGoogle Scholar |
[8] Gagne CA, Finch WL, Myrick KJ, Davis LM. Peer workers in the behavioral and integrated health workforce: opportunities and future directions. Am J Prev Med 2018; 54 S258–66.
| Peer workers in the behavioral and integrated health workforce: opportunities and future directions.Crossref | GoogleScholarGoogle Scholar | 29779550PubMed |
[9] Pinches A. What the consumer movement says about recovery. 2004. Available at: https://www.ourcommunity.com.au/files/OCP/PinchesRecovery.pdf [verified 11 June 2020].
[10] Ostrow L, Adams N. Recovery in the USA: from politics to peer support. Int Rev Psychiatry 2012; 24 70–8.
| Recovery in the USA: from politics to peer support.Crossref | GoogleScholarGoogle Scholar | 22385429PubMed |
[11] Davidson L, Bellamy C, Guy K, Miller R. Peer support among persons with severe mental illnesses: a review of evidence and experience. World Psychiatry 2012; 11 123–8.
| Peer support among persons with severe mental illnesses: a review of evidence and experience.Crossref | GoogleScholarGoogle Scholar | 22654945PubMed |
[12] Gillard S, Foster R, Gibson S, Goldsmith L, Marks J, White S. Describing a principles-based approach to developing and evaluating peer worker roles as peer support moves into mainstream mental health services. Ment Health Soc Inclusion 2017; 21 133–43.
| Describing a principles-based approach to developing and evaluating peer worker roles as peer support moves into mainstream mental health services.Crossref | GoogleScholarGoogle Scholar |
[13] Department of Health. The fifth national mental health and suicide prevention plan. 2017. Available at: https://www1.health.gov.au/internet/main/publishing.nsf/Content/mental-fifth-national-mental-health-plan [verified 11 June 2020].
[14] Health Workforce Australia. Mental health peer workforce study. 2014. Available at: http://www.mhcsa.org.au/wp-content/uploads/2018/12/HWA-Mental-health-Peer-Workforce-Study.pdf [verified 11 June 2020].
[15] Leamy M, Bird V, Le Boutillier C, Williams J, Slade M. Conceptual framework for personal recovery in mental health: systematic review and narrative synthesis. Br J Psychiatry 2011; 199 445–52.
| Conceptual framework for personal recovery in mental health: systematic review and narrative synthesis.Crossref | GoogleScholarGoogle Scholar | 22130746PubMed |
[16] Byrne L, Happell B, Reid-Searl K. Lived experience practitioners and the medical model: world’s colliding? J Ment Health 2016; 25 217–23.
| Lived experience practitioners and the medical model: world’s colliding?Crossref | GoogleScholarGoogle Scholar | 26652034PubMed |
[17] Pilgrim D. Protest and co-option – the voice of mental health service users. In: Bell A, Lindley P, editors. Beyond the water towers: the unfinished revolution in mental health services 1985–2005. London: The Sainsbury Centre for Mental Health; 2005. pp. 17–26. Available at https://www.centreformentalhealth.org.uk/sites/default/files/beyond_the_water_towers.pdf [verified 11 June 2020].
[18] Gillard SG, Edwards C, Gibson SL, Owen K, Wright C. Introducing peer worker roles into UK mental health service teams: a qualitative analysis of the organisational benefits and challenges. BMC Health Serv Res 2013; 13 188
| Introducing peer worker roles into UK mental health service teams: a qualitative analysis of the organisational benefits and challenges.Crossref | GoogleScholarGoogle Scholar | 23705767PubMed |
[19] Gamson W. Movement impact on cultural change. In: S Pfohl, A Van Wagenen, P Arend, A Brooks, D Leckaby, editors. Culture, power and history: studies in critical sociology. Boston, MA: Brill Publishers; 2005. pp. 103–125.
[20] Mead S, MacNeil C. Peer support: what makes it unique. Int J Psychosoc Rehabil 2006; 10 29–37.
[21] Hutchinson A, Lovell A. Participatory action research: moving beyond the mental health ‘service user’ identity. J Psychiatr Ment Health Nurs 2013; 20 641–649.
| Participatory action research: moving beyond the mental health ‘service user’ identity.Crossref | GoogleScholarGoogle Scholar | 23167824PubMed |
[22] Silver J, Nemec PB. The role of the peer specialists: unanswered questions. Psychiatr Rehabil J 2016; 39 289–91.
| The role of the peer specialists: unanswered questions.Crossref | GoogleScholarGoogle Scholar | 27618464PubMed |
[23] Clark C, Barrett B, Frei A, Christy A. What makes a peer a peer? Psychiatr Rehabil J 2016; 39 74–6.
| What makes a peer a peer?Crossref | GoogleScholarGoogle Scholar | 25984734PubMed |
[24] Cronise R, Teixeira C, Rogers ES, Harrington S. The peer support workforce: results of a national survey. Psychiatr Rehabil J 2016; 39 211–21.
| The peer support workforce: results of a national survey.Crossref | GoogleScholarGoogle Scholar | 27618458PubMed |
[25] Byrne L, Roennfeldt H, O’Shea P, Macdonald F. Taking a gamble for high rewards? Management perspectives on the value of mental health peer workers. Int J Environ Res Public Health 2018; 15 746
| Taking a gamble for high rewards? Management perspectives on the value of mental health peer workers.Crossref | GoogleScholarGoogle Scholar |
[26] Berry C, Hayward MI, Chandler R. Another rather than other: experiences of peer support specialist workers and their managers working in mental health services. J Public Ment Health 2011; 10 238–49.
| Another rather than other: experiences of peer support specialist workers and their managers working in mental health services.Crossref | GoogleScholarGoogle Scholar |
[27] Jenkins S, Chenneville T, Salnaitis C. Are peer specialists happy on the job? Psychiatr Rehabil J 2018; 41 72–5.
| Are peer specialists happy on the job?Crossref | GoogleScholarGoogle Scholar | 28447820PubMed |
[28] McLean J, Biggs H, Whitehead I, Pratt R, Maxwell M. Evaluation of the Delivering for Mental Health Peer Support Worker pilot scheme. Edinburgh: Scottish Government Social Research; 2009. Available at: www.scotland.gov.uk/Resource/Doc/291864/0089933.pdf [verified 26 June 2020].
[29] Johnson JL, Bottorff JL, Browne AJ, Grewal S, Hilton BA, Clarke H. Othering and being othered in the context of health care services. Health Commun 2004; 16 255–71.
| Othering and being othered in the context of health care services.Crossref | GoogleScholarGoogle Scholar | 15090288PubMed |
[30] Corbin J, Strauss A. Basics of qualitative research: techniques and procedures for developing grounded theory. 3rd edn. London: SAGE Publications; 2008.
[31] Charmaz K. Constructing grounded theory. 2nd edn. London: SAGE Publications; 2014.
[32] Glaser BG, Strauss AL. The discovery of grounded theory. New York: Adline de Gruyter; 1967.
[33] Byrne L, Roennfeldt H, Wang Y, O’Shea P. ‘You don’t know what you don’t know’: the essential role of management exposure, understanding and commitment in peer workforce development. Int J Ment Health Nurs 2019; 28 572–81.
| ‘You don’t know what you don’t know’: the essential role of management exposure, understanding and commitment in peer workforce development.Crossref | GoogleScholarGoogle Scholar | 30609234PubMed |
[34] Dickerson F, Savage CL, Schweinfurth LA, Goldberg RW, Bennett M, Dixon L, Daumit G, Chinman M, Lucksted A. The experience of peer mentors in an intervention to promote smoking cessation in persons with psychiatric illness. Community Ment Health J 2016; 52 416–23.
| The experience of peer mentors in an intervention to promote smoking cessation in persons with psychiatric illness.Crossref | GoogleScholarGoogle Scholar | 26602772PubMed |
[35] Barkway P, Mosel K, Simpson A, Oster C, Muir-Cochrane E. Consumer and carer consultants in mental health: the formation of their role identity. Adv Ment Health 2012; 10 157–68.
| Consumer and carer consultants in mental health: the formation of their role identity.Crossref | GoogleScholarGoogle Scholar |
[36] Ning L. Building a ‘user driven’ mental health system. Adv Ment Health 2010; 9 112–15.
| Building a ‘user driven’ mental health system.Crossref | GoogleScholarGoogle Scholar |
[37] Hurley J, Cashin A, Mills J, Hutchinson M, Graham I. A critical discussion of peer workers: implications for the mental health nursing workforce. J Psychiatr Ment Health Nurs 2016; 23 129–35.
| A critical discussion of peer workers: implications for the mental health nursing workforce.Crossref | GoogleScholarGoogle Scholar | 26914867PubMed |
[38] Mead S, Hilton D, Curtis L. Peer support: a theoretical perspective. Psychiatr Rehabil J 2001; 25 134–141.
| Peer support: a theoretical perspective.Crossref | GoogleScholarGoogle Scholar | 11769979PubMed |
[39] Penney D. Defining ‘peer support’: implications for policy, practice, and research. Sudbury, MA: Advocates for Human Potential Inc.; 2018.
[40] Slade M, Amering M, Farkas M, Hamilton B, O’Hagan M, Panther G, Perkins R, Shepherd G, Tse S, Whitley R. Uses and abuses of recovery: implementing recovery-oriented practices in mental health systems. World Psychiatry 2014; 13 12–20.
| Uses and abuses of recovery: implementing recovery-oriented practices in mental health systems.Crossref | GoogleScholarGoogle Scholar | 24497237PubMed |
[41] Moran GS, Russinova Z, Gidugu V, Gagne C. Challenges experienced by paid peer providers in mental health recovery: a qualitative study. Community Ment Health J 2013; 49 281–91.
| Challenges experienced by paid peer providers in mental health recovery: a qualitative study.Crossref | GoogleScholarGoogle Scholar | 23117937PubMed |
[42] Stewart S, Watson S, Montague R, Stevenson C. Set up to fail? Consumer participation in the mental health service system. Australas Psychiatry 2008; 16 348–53.
| Set up to fail? Consumer participation in the mental health service system.Crossref | GoogleScholarGoogle Scholar | 18608147PubMed |
[43] Thornicroft G, Slade M. Comparing needs assessed by staff and by service users: paternalism or partnership in mental health? Epidemiol Psychiatr Soc 2002; 11 186–91.
| Comparing needs assessed by staff and by service users: paternalism or partnership in mental health?Crossref | GoogleScholarGoogle Scholar |
[44] Byrne L, Happell B, Welch T, Moxham LJ. ‘Things you can’t learn from books’: teaching recovery from a lived experience perspective. Int J Ment Health Nurs 2013; 22 195–204.
| ‘Things you can’t learn from books’: teaching recovery from a lived experience perspective.Crossref | GoogleScholarGoogle Scholar | 23020070PubMed |
[45] Crossley N. Not being mentally ill: social movements, system survivors and the oppositional habitus. Anthropol Med 2004; 11 161–80.
| Not being mentally ill: social movements, system survivors and the oppositional habitus.Crossref | GoogleScholarGoogle Scholar | 26868200PubMed |
[46] Yanos PT, Lysaker PH, Roe D. Internalized stigma as a barrier to improvement in vocational functioning among people with schizophrenia-spectrum disorders. Psychiatry Res 2010; 178 211–13.
| Internalized stigma as a barrier to improvement in vocational functioning among people with schizophrenia-spectrum disorders.Crossref | GoogleScholarGoogle Scholar | 20417973PubMed |
[47] Rüsch N, Abbruzzese E, Hagedorn E, Hartenhauer D, Kaufmann I, Curschellas J, Corrigan PW. Efficacy of coming out proud to reduce stigma’s impact among people with mental illness: pilot randomised controlled trial. Br J Psychiatry 2014; 204 391–7.
| Efficacy of coming out proud to reduce stigma’s impact among people with mental illness: pilot randomised controlled trial.Crossref | GoogleScholarGoogle Scholar | 24434073PubMed |
[48] Corrigan PW, Al-Khouja MA. Three agendas for changing the public stigma of mental illness. Psychiatr Rehabil J 2018; 41 1–7.
| Three agendas for changing the public stigma of mental illness.Crossref | GoogleScholarGoogle Scholar | 29494197PubMed |
[49] Corrigan PW, Morris S, Michaels P, Rafacz J, Rüsch N. Challenging the public stigma of mental illness: a meta-analysis of outcome studies. Psychiatr Serv 2012; 63 963–73.
| Challenging the public stigma of mental illness: a meta-analysis of outcome studies.Crossref | GoogleScholarGoogle Scholar | 23032675PubMed |
[50] Michaels PJ, Corrigan PW, Buchholz B, Brown J, Arthur T, Netter C, MacDonald-Wilson KL. Changing stigma through a consumer-based stigma reduction program. Community Ment Health J 2014; 50 395–401.
| Changing stigma through a consumer-based stigma reduction program.Crossref | GoogleScholarGoogle Scholar | 23760975PubMed |