Beautiful but fragile: the experiences of family/carer lived experience workers within mental health services

Abstract

ABSTRACT Objective Family/carer Lived Experience (LE) workers are increasingly being hired in Victorian mental health services, bringing their personal experience of supporting someone using these services and the ability to apply that experience in their roles. This project asked family/carer LE workers in Victoria, Australia to detail their experiences of working in these roles, how their personal lived experience of caring intersected with their work, and what they thought was needed to make family/carer LE work sustainable. Method A co-produced mixed-method design was used, including a survey of 62 Victorian family/carer LE workers and photovoice workshops attended by ten workers. The survey captured broad workforce trends, while the workshops provided narratives illustrating work experiences. Data from both sources were analysed separately and then combined into categories reflecting key dimensions of the family/carer LE worker experience. Results The findings were grouped into the following categories: Passion for the Work, Working Relationally in an Individualistic System, Undervalued and Poorly Understood, Workplace Conditions, Training and Development, Isolation, Beautiful but Fragile, Impact of the Work, and What is Sustaining the Work. Discussion This project emphasised the unique emotional labour family/carer LE workers perform and the specific supports they need. A clear model of practice for the profession is necessary, alongside cultural changes within mental health organisations to better integrate the strengths of this workforce.