Barriers to genuine consumer and carer participation from the perspectives of Australian systemic mental health advocates

Background: Consumer and carer participation in mental health service development and evaluation has widespread nominal support. However, genuine and consistent participation remains elusive due to systemic barriers.

Aims: This paper explores barriers to reform for mental health services from the perspectives of consumers and carers actively engaged in advocating for improvements in the mental health system.

Method: Qualitative research with two mental health systemic advocacy organisations analysed 17 strategic communication documents and nine interviews to examine barriers to reform and participation identified by consumer and carer advocates and staff.

Results: A number of individual-level barriers were described, however advocates gave more focus to systemic barriers, for which five themes emerged. These reflected lack of awareness, limited participation opportunities, slow progress for change, policy issues and mental health culture including stigma.

Conclusions: Findings highlight systemic barriers to participation for consumer and carer advocates as a whole and the influence of these barriers on the individual experiences of those engaged in advocacy and representation work. Participants also emphasised the need for leadership to overcome some of these obstacles and move towards genuine consumer and carer participation and reform. Findings are discussed in the context of power within mental health systems.