title: 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.
  
  
  OBJECTIVE
  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.
  
  
  METHODS
  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.
authors.affiliation: a Research School of Psychology, The Australian National University , Canberra , ACT , Australia .
authors.forename: Alison
authors.initials: A
authors.lastname: Gee
authors.affiliation: b School of Social Sciences and Psychology, Western Sydney University , Penrith , NSW , Australia , and.
authors.forename: Craig
authors.initials: C
authors.lastname: McGarty
authors.affiliation: c Australian Primary Health Care Research Institute, The Australian National University , Canberra , ACT , Australia.
authors.forename: Michelle
authors.initials: M
authors.lastname: Banfield
mesh_terms: D001315:Australia; D017028:Caregivers; D018166:Health Care Reform; D006301:Health Services Needs and Demand; D006801:Humans; D008605:Mental Health Services / Q000458:organization & administration*; D010358:Patient Participation; D036301:Qualitative Research
keywords: Advocacy; barriers; carer participation; consumer participation; user involvement