Consumer-run services research and implications for mental health care

Abstract

Mental health consumers/survivors developed consumer-run services (CRSs) as alternatives to disempowering professionally run services that limited participant self-determination. The objective of the CRS is to promote recovery outcomes, not to cure or prevent mental illness. Recovery outcomes pave the way to a satisfying life as defined by the individual consumer despite repetitive episodes of disorder. Recovery is a way of life, which through empowerment, hope, self-efficacy, minimisation of self-stigma, and improved social integration, may offer a path to functional improvement that may lead to a better way to manage distress and minimise the impact of illness episodes. ‘Nothing about us without us’ is the defining objective of the process activity that defines self-help. It is the giving of agency to participants. Without such process there is a real question as to whether an organisation is a legitimate CRS or simply a non-governmental organisation run by a person who claims lived experience. In considering the effectiveness of CRSs, fidelity should be defined by the extent to which the organisation's process conveys agency. Unidirectional helping often does for people what they can do for themselves, stealing agency. The consequence of the lack of fidelity in CRSs to the origins of the self-help movement has been a general finding in multisite studies of no or little difference in outcomes attributable to the consumer service. This, from the perspective of the research summarised herein, results in the mixing of programmatic efforts, some of which enhance outcomes as they are true mutual assistance programmes and some of which degrade outcomes as they are unidirectional, hierarchical, staff-directed helping efforts making false claims to providing agency. The later CRS interventions may provoke disappointment and additional failure. The indiscriminate combining of studies produces the average: no effect.

Understanding how engagement in a self‐managed shelter contributes to empowerment

“…[Author]'s role‐framework (2012) provided insight into participants' developing roles, relations, skills and self‐image. Our findings also support the statement that there is a relation between engagement with the relational environment and program management and (explicit) participant development (Author, 2015; Segal & Hayes, 2016).…”

“…Self‐organised care is associated with participants' empowerment, specifically through the development of roles, relations, skills and self‐image (Brown, 2012). Participants who are less engaged with activities and program management, experience fewer benefits (Brown, 2012; Segal & Hayes, 2016). Peer support, in general, is associated with empowerment (Barker, Maguire, Bishop, & Stopa, 2018).…”

“I don't think we've quite got there yet”: The experience of allyship for mental health consumer researchers

“…Participant responses suggested that allies have to work within practical constraints, seizing opportunities by corralling resources when they can, while at the same time advocating for the positions at multiple levels and across a range of settings. The stigma associated with mental illness further impacts on the perceived credibility of consumer researchers (Ghisoni et al., ; Hipes, Lucas, Phelan, & White, ; Segal & Hayes, ). Allies, on the other hand, are seen as credible due to their positions, professional background and research track record (Happell & Scholz, ; Hutchison, ).…”

‘It depends what you mean by leadership’: An analysis of stakeholder perspectives on consumer leadership

“…; Scholz et al . ,b) or its conflation with other forms of involvement or more tokenistic practices (Segal & Hayes ; Scholz et al ., 2017).…”

“…Consumer leadership is difficult to define in part because of its inconsistency with traditional leadership styles. Consumer leadership has been described as less hierarchical in nature than conventional leadership models, in which power is concentrated at the top of hierarchies (Jones & Shattell ; Segal & Hayes ). Indeed, Piat et al .…”