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

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.

National Disability Insurance Scheme and Lived Experience of People Presenting to the Emergency Department: Protocol for a Mixed Methods Study.

BACKGROUND: Currently, within Australia, 3.6% of all emergency department (ED) presentations are mental health-related. Information about the context of the person presenting to the ED (beyond immediate needs), including their psychosocial disability (PSD) National Disability Insurance Scheme (NDIS) plan, is reported as incomplete and fragmented. There are missed opportunities for early support and care continuity that could potentially inform ED practitioners to revise current practices. OBJECTIVE: The aims of this study are: (1) to obtain original data from the lived experience voice of those with the PSD NDIS plan and their experience when presenting to an ED, (2) to gather information from NDIS service providers to reveal communication pathways between the ED and NDIS services, and (3) to gain knowledge from ED clinicians around processes for improving continuity of care and consumer experience. METHODS: This inductive, mixed methods phenomenological study will involve data collection analyzed sequentially, with each stage informing future stages of the research. Interviews will focus on the lived experience voice exploring concerns that have led to an ED presentation, alongside an analysis of associated clinical and administrative documentation and communications. Focus groups with NDIS support workers and support coordinators will provide phenomenological data around the experience from their perspective. National quantitative surveys among those with a PSD NDIS plan and emergency services clinicians will provide insight into current practices within community care and ED presentations. The research project design includes a lived experience advisory group who are assisting with the design of the interview and focus group schedules and national surveys, as well as in shaping the interpretation of qualitative information. All transcripts will be subject to thematic analysis to understand individuals' meaning-making of these complex and particular phenomena. The research team includes a lived experience researcher and a lived experience carer (PhD candidate). RESULTS: This study is funded by MIND Australia as a PhD industry scholarship, which commenced in April 2020. A systematic review as a preresearch activity has been completed and is currently under review. The Human Research Ethics Committee of the University of South Australia has approved this project. An advisory group has been selected, and interview, focus group, and survey schedules are currently being codesigned. Recruitment will commence in November 2021. It is envisaged that data collection will be completed by June 2022. CONCLUSIONS: Understanding the lived experience of the precare, during care, and postcare stages of ED presentations from the perspective of those with a PSD NDIS plan will inform the research team around current practices and provide information about improvement for pathways of care for consumers and carers, while also informing health policy. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/33268.

Correction: National Disability Insurance Scheme and Lived Experience of People Presenting to the Emergency Department: Protocol for a Mixed Methods Study.

[This corrects the article DOI: 10.2196/33268.].

Losses related to everyday occupations for adults affected by mental illness.

OBJECTIVE: This paper presents findings from a larger study that explored losses from mental illness. Losses associated with occupations--a key theme from this participatory action research study--are the focus of this paper. METHODS: Semi-structured in-depth interviews were carried out with 16 people who had been diagnosed with a mental illness and attended a community mental health centre. Interviews were transcribed verbatim and thematically analysed, guided by processes proposed by Dey. RESULTS: Numerous losses influenced participants' ability to initiate or engage in daily occupations. Some losses perpetuated further loss, at times with profound consequences, such as the loss of a house following a loss of work. Engaging in chosen occupations was often described as a longer-term goal or something participants did infrequently, due to losses such as motivation, energy, or normal sleeping patterns. The desire to work and participate in everyday occupations was emphasized and its benefits highlighted, despite previous difficulties. CONCLUSIONS: Implications for occupational therapists include the importance of exploring, validating, and responding to losses when these are shared, and being aware of and striving to support people experiencing losses in the areas of work, motivation, sleep patterns, and energy, which were perceived as especially challenging for participants in this study.