ABSTRACT
Background
Although 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.
Method
Using 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.
Results
Key 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.
Conclusion
This 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.