ArticleHealth expectations : an international journal of public participation in health care and health policy2026
Connect Coordination Victoria and the Establishment of a State-Wide Network of Family Carer Mental Health and Well-being Connect Centres: Family Carer Lived Experience Leadership Through Online Community Co-Design, Communities of Practice and Power Sharing.
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
backgroundThis paper builds upon previous research in which we systematically identified the coordinating values of Connect Coordination Victoria: a non-government, family carer-led coordination body overseeing a network of tailored services for mental health family carers in Victoria, Australia. The four core values we identified were: connection, responsiveness, consistency and flexibility. Wanting to see if these values continued across additional data, led us to a second iteration of our initial findings. In this paper, we describe secondary findings related to Connect Coordination Victoria's values with special attention to how power was acknowledged and addressed across their activities.
methodsThe research team used document analysis and reflexive thematic analysis to systematically identify, code, and analyse n = 41 documents (17,630 words) that captured the coordination activities of Connect Coordination Victoria between November 2023 and September 2025. We describe our analysis of documents related to two Connect Coordination Victoria-led projects: an online community co-design project and Communities of Practice. We sourced documents using a best-practice, systematic process that evaluated each document according to six factors: relevance, authenticity, credibility, accuracy, representativeness and completeness. 10,365 words were included for analysis in this study.
resultsWe determined n = 3 core coordinating values of Connect Coordination Victoria continued across the data. These values were: connection, consistency and flexibility. We also found that identifying and addressing power dynamics underscored the enactment of Connect Coordination Victoria's values. DISCUSSION: Our research demonstrated that Connect Coordination Victoria created a specific power dynamic between themselves as coordinators and the family carer-led Connect centre workforce. This power dynamic privileged values of connection, consistency and flexibility. Connect Coordination Victoria's family carer lived experience leadership represents an important case study for the success of values-led lived experience coordination of tailored services for family carers in mental health.
conclusionThis research lends support to the need redistribute power across mental health systems so that those with family carer lived experience can step into leadership roles that enable them to shape the services and systems that directly impact them and those they care for. PATIENT OR PUBLIC CONTRIBUTION: This research was developed, designed, conducted, and written by researchers with family carer lived experience. The secondary data we analysed related to the family carer-led coordination of a tailored service for mental health family carers. All authors hold a lived experience of caring for and/or supporting people experiencing mental health challenges. No generative AI was used at any stage of this research project.
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