A systematic review of available, published international evidence for the effectiveness of service user-run, or service user-led, mental health services was requested by the Mental Health Commission. It seeks to inform service users, service providers and those who develop, plan and purchase services and those who determine policy and legislation.
Purpose
The main objective of this report is to systematically identify and appraise the international evidence for the effectiveness of service user-run or service user-led mental health services for people with mental disorders.
A service user-run, service user-led service is defined as a programme, project, or service planned, administered, delivered, and evaluated by a service user group based on needs defined by the service user group. Operation of the service requires self-governance by service users themselves, service user staffing and supervision of this staff, service user control of programme policy, and service user responsibility for programme implementation.
This report seeks to highlight the potential for investment in, and future evaluation of, service user-run initiatives and services within the mental health sector.
Methodology
The literature was searched using the following bibliographic databases: Medline, PsychInfo, Embase, Current Contents, Cinahl, Web of Science and Index New Zealand.
In the preliminary search undertaken for this review, additional sources searched included major online library catalogues, website sources such as evidence-based and guidelines sites, government health websites, related health professional association websites, and major websites. Other electronic and library catalogue sources searched included: the Cochrane Library and Database of Abstracts of Reviews of Effectiveness. Several Internet websites were also searched to access organisations with a focus on mental health service users. In New Zealand, databases were accessed from the National Bibliographic Database,Ministry of Health website and library, university and medical library catalogues and the New Zealand Health Technology Assessment unit’s in-house collection. Relevant publications referenced in material obtained in the course of research on the topic were also identified.
Searches were limited to English language material from 1980 to May 2004 inclusive. Studies were included if they described or evaluated a service user-run or service user-led service.
Excluded retrieved articles included abstracts and correspondence; background studies, book chapters, unpublished reports and case studies or series.
A systematic method of literature searching, selection and appraisal was employed in the preparation of this report. Studies are summarised (using the spelling of the original article) and presented by study design, and for each type of study design, alphabetically by the lead author.
Of more than 175 articles identified by the search strategy, 85 articles were retrieved as full text from which a final group of 26 primary data papers and two systematic reviews were identified as eligible for appraisal and inclusion in the review.
Key Results
Overall, research on consumer services reports very positive outcomes for clients. This review of effectiveness found some studies that reported higher levels of satisfaction with services, general wellbeing and quality of life while others reported no significant differences between service user-run services and mental health services run by non-service user providers. No studies reported evidence of harm to service users or that consumer services were less effective than the equivalent services offered within a traditional setting.
The evidence base supporting the effectiveness of service user-run services is gradually expanding. The findings to date have to be interpreted with caution as the majority of service user-run services identified by this review were operated alongside clinical staff, peer specialists on case management teams or crisis teams. This implies that the setting in which studies were conducted fulfils the definition of a consumer provided or partnership service but may not meet the more stringent operational definition of a consumer run service in terms of the level of autonomy, self-governance and the level of consumer control required. The positive effect on outcomes could potentially be greater for consumer run services than those with a participation model of consumer involvement. This is as yet unknown. Therefore it is vitally important that in the future effectiveness research measuring meaningful outcomes for The Effectiveness of Service User-Run or Service User-Led Mental Health Services for People With Mental Illness service users is carried out on a wider range of different models or types of services in existence and that any differences in effect are formally evaluated.
Consumer-run services worldwide receive very limited funding from mental health budgets despite a growing trend that suggests they may represent an effective model of mental health service delivery. Furthermore, to justify their place in the array of services offered within the mental health sector, a strong case can be made that services should only be required to demonstrate equivalent effectiveness compared with traditional services rather than superiority in regard to outcomes for clients.
At present there is a mixed record of research on service user delivered services and more research on the effectiveness of these services is urgently needed to establish a broader evidence base for policy and advocacy. Despite a great deal of prior descriptive work that supports the feasibility of consumer provided services only a limited number of controlled studies have been published focusing on outcomes for people who participate in, or receive care or support from, these services. To date, there is very little evaluative work that has been done in this area in New Zealand.
The potential already exists for New Zealand specific research and evaluation of service userrun, service user-led services but to achieve this goal, a full range of service user-run or led services, need to be developed, piloted and funded in a sustainable way.