ArticleHealth expectations : an international journal of public participation in health care and health policy2026
Beyond 'The Squeaky Wheel': The Passion, Precarity and Potential of the Family/Carer Lived Experience Workforce in the Queensland Mental Health System.
Article in Health expectations : an international journal of public participation in health care and health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundAlthough family inclusion is embraced in mental health policy and practice guidelines, families continue to report feeling devalued and/or excluded from service delivery. Family/Carer Lived Experience (LE) workers play an important role in supporting and advocating for families with a member who is accessing a mental health service. While embedding lived experience in service provision is a priority, there is limited understanding of the role of the Family/Carer LE workforce.
methodUsing a survey and focus groups, this mixed methods study investigated workforce conditions and available supports for Family/Carer LE workers employed in the Queensland mental health system, Australia.
resultsKey findings demonstrated that this workforce is passionate about working relationally with families yet, face precarious workplace conditions including lack of role clarity, lack of job security, prioritisation of bio-medical approaches over LE expertise, and experiences of moral injury. Findings illustrated how Family/Carer LE workers' experiences can mirror their carer experience, with many reporting being isolated and unsupported in their workplace roles. DISCUSSION: These work conditions impact on the Family/Carer LE workforce and undermine the sustainability of their roles. Recommendations point to the need for organisational readiness, role clarity, adequate support, training and supervision, and meaningful integration into mental health services.
conclusionThis study underscores the need for systemic change to ensure family inclusion becomes a reality as opposed to rhetoric. Until such time Family/Carer LE workers will continue to be 'the squeaky wheel'. PATIENT OR PUBLIC CONTRIBUTION: The research team consisted of four academics experienced in family/carer inclusion and/or with Family/Carer LE, and two Family/Carer LE leaders (one(one of which was a researcher). A Family/Carer LE Worker Advisory Group comprising seven Family/Carer LE workers guided each stage of the research process, particularly adapting the workforce survey. A Family/Carer LE researcher from our team was involved in the study's conceptualisation, data collection, data analysis and preparation of the manuscript.
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