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. 2022 Aug 11;ahead-of-print(ahead-of-print).
doi: 10.1108/LHS-04-2022-0045.

A model of lived experience leadership for transformative systems change: Activating Lived Experience Leadership (ALEL) project

Mark Loughhead  1 , Ellie Hodges  2 , Heather McIntyre  1 , Nicholas Gerard Procter  1 , Anne Barbara  2 , Brooke Bickley  2 , Geoff Harris  3 , Lisa Huber  4 , Lee Martinez  5
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Free article

A model of lived experience leadership for transformative systems change: Activating Lived Experience Leadership (ALEL) project

Mark Loughhead et al. Leadersh Health Serv (Bradf Engl). .
Free article

Abstract

Purpose: This discursive paper presents a lived experience leadership model as developed as part of the Activating Lived Experience Leadership (ALEL) project project to increase the recognition and understanding of lived experience leadership in mental health and social sectors. The model of lived experience leadership was formulated through a collaboration between the South Australian Lived Experience Leadership & Advocacy Network and the Mental Health and Suicide Prevention Research and Education Group.

Design/methodology/approach: As one of the outcomes of the ALEL research project, this model incorporates findings from a two-year research project in South Australia using participatory action research methodology and cocreation methodology. Focus groups with lived experience leaders, interviews with sector leaders and a national survey of lived experience leaders provided the basis of qualitative data, which was interpreted via an iterative and shared analysis. This work identified intersecting lived experience values, actions, qualities and skills as characteristics of effective lived experience leadership and was visioned and led by lived experience leaders.

Findings: The resulting model frames lived experience leadership as a social movement for recognition, inclusion and justice and is composed of six leadership actions: centres lived experience; stands up and speaks out; champions justice; nurtures connected and collective spaces; mobilises strategically; and leads change. Leadership is also guided by the values of integrity, authenticity, mutuality and intersectionality, and the key positionings of staying peer and sharing power.

Originality/value: This model is based on innovative primary research, which has been developed to encourage understanding across mental health and social sectors on the work of lived experience leaders in seeking change and the value that they offer for systems transformation. It also offers unique insights to guide reflective learning for the lived experience and consumer movement, workers, clinicians, policymakers and communities.

Keywords: Cocreation; Consumers; Empowerment; Health leadership initiatives; Health service; Leadership; Leadership model; Lived experience; Lived experience leadership; Mental health; Participatory action research; Rural; Rural areas; Systems change; Transformational leadership.

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References

    1. Australian Health Ministers (1992), National Mental Health Policy, Australian Government Publishing Service, Canberra.
    1. Australian Health Ministers’ Advisory Committee (2003), National Mental Health Plan 2003-2008, Commonwealth of Australia, Canberra.
    1. Baum, F., MacDougall, C. and Smith, D. (2006), “Participatory action research”, Journal of Epidemiology and Community Health, Vol. 60 No. 10, pp. 854-857.
    1. Benjamin-Thomas, T.E., Corrado, A.M., McGrath, C., Rudman, D.L. and Hand, C. (2018), “Working towards the promise of participatory action research: learning from ageing research exemplars”, International Journal of Qualitative Methods, Vol. 17 No. 1, p. 160940691881795.
    1. Byrne, L. and Wykes, T. (2020), “A role for lived experience mental health leadership in the age of covid-19”, Journal of Mental Health, Vol. 29 No. 3, pp. 243-246.

Further reading

    1. Australian Commission on Safety and Quality in Health Care (2018), Review of the Key Attributes of High-Performing Person-Centred Healthcare Organisations, ACSQHC, Sydney.
    1. Australian Human Rights Commission (2022), “United nations convention on the rights of persons with disabilities (UNCRPD)”, available at: https://humanrights.gov.au/our-work/disability-rights/united-nations-con...
    1. Byrne, L., Stratford, A. and Davidson, L. (2018), “The global need for lived experience leadership”, Psychiatric Rehabilitation Journal, Vol. 41 No. 1, pp. 76-79.
    1. Happell, B. and 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, Vol. 27 No. 1, pp. 440-447.
    1. Hurley, J., Cashin, A., Mills, J., Hutchinson, M., Kozlowski, D. and Graham, I. (2018), “Qualitative study of peer workers within the ‘partners in recovery’ programme in regional Australia”, International Journal of Mental Health Nursing, Vol. 27 No. 1, pp. 187-195.

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