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

Abstract

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.

• Advocacy
• barriers
• carer participation
• consumer participation
• user involvement

Acknowledgements

We thank the participating organisations and advocates for their involvement in this project. This paper is based on research conducted at the Research School of Psychology at The Australian National University. The manuscript was prepared at the Australian Primary Health Care Research Institute, which is supported by a grant from the Australian Government Department of Health and Ageing. The information and opinions contained in it do not necessarily reflect the views or policy of the Australian Primary Health Care Research Institute or the Australian Government Department of Health and Ageing. Michelle Banfield is supported by Australian Research Council Discovery Early Career Researcher Award number DE150100637.

Declaration of interest

The authors have no conflict of interest.

Notes

¹The authors acknowledge the number of alternatives to “consumer” (e.g. user, patient, client, survivor). The term “consumer” is used throughout this paper as this is the term used by the advocacy organisations observed.

²The term “participation” is used widely in Australia and is adopted in this paper consistent with that used by the advocacy organisations in the current research. However, terms such as “participation”, “involvement” and “engagement” differ across countries and are argued to be contested and poorly conceptualised concepts (Rose, 2014).