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

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.

Actions targeting the integration of peer workforces in mental health organisations: a mixed-methods systematic review

“…Results of this review consistently align with published recommendations and guidelines which highlight the need for organisations to understand lived experience work, commit to workforce development and engage in co-production practices and work together to plan and support mental health system reform. Workforce guidelines, including Australia’s National Mental Health Commission guidelines, in addition to those developed in Queensland and South Australia, encourage organisational change based on guidance from local lived experience leaders and peak bodies [ 19 , 55 , 56 ]. Working from accepted and authentic definitions of lived experience and designated roles avoids role distortion or co-option of peer work values when working alongside clinicians or within mental health services [ 18 ].…”

“…Consistent strong leadership, clear messaging and championing of peer roles plays an integral part in legitimising the services peer practitioners provide, promoting the adoption and adherence to recovery principles, language, attitudes and approach to service delivery. These aspects of leadership need to be augmented by the growth of employed peer leaders and senior practitioners within services, with this being a prominent theme in Australian literature [ 46 ] and industry [ 55 , 61 ]. The promotion of consumer leadership as a key component of recovery orientated practice encourages the shift on a systems level towards a greater more inclusive recovery culture, models of care and service provision [ 53 ].…”

Transformational leadership and work engagement as mediators on nurses’ job performance in healthcare clinics: work environment as a moderator

“…Leaders play an important role to guide and steer an organization, and their leadership style can influence the development of organizational and employee performance (Manzoor et al , 2019) and the followers depending on certain conditions (Zheng et al , 2020). Professional leadership is guided by principles of truth, realism and affinity in addition to the key positionings of handling peers and sharing power (Loughhead et al , 2023). In the nursing profession, transformational leadership (TL) enables nursing leaders to motivate nurses and effectively implement innovative changes in nursing practice (Jambawo, 2018).…”

A co-design living labs philosophy of practice for end-to-end research design to translation with people with lived-experience of mental ill-health and carer/family and kinship groups

“…While mainstream service design/re-design, quality improvement, and systems transformation efforts have grappled with the implementation of co-design for some time now, there has been less examination of how to configure academic, university, and other research settings to embed lived-experience-centred models for research implementation and translation efforts ( 4 , 12 ). Given the hierarchical nature of academic contexts and the diversity of mental health research disciplines, this is challenging, and there is a need to evaluate how lived-experience is being somewhat uncomfortably positioned as an indicator of political and social recognition of inclusion ( 16 , 17 ). Centring lived-experience is particularly important in spaces where people have experienced systemic injustices and possibly significant harm and have not had the full protection of human rights and recognition of their voices.…”

“…[Or] as associated with Lived Experience of poverty, trauma and other forms of prejudice and discrimination (e.g., racism and ableism)” ( 20 ) (p. 3) is fundamental. Publications on the importance of inclusion and lived-experience leadership expand upon substantive experience to suggest that diverse qualities are held and enacted by people with lived-experience, which generate change within and across mental health and social sectors (such as championing justice, centring lived-experience, and building relationships with peers and allies) ( 17 ). In the context of Aboriginal and Torres Strait Islander communities, lived-experience is expanded to “recognise the effects of ongoing negative historical impacts of colonisation or specific events on the social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples.…”