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Consumer-Operated Services: the Evidence The Consumer- Evidence Operated Services The Consumer- Evidence Operated Services U.S. Department of Health and Human Services Substance Abuse and Mental Health Services Administration Acknowledgments This document was produced for the Substance Abuse and Mental Health Services Administration (SAMHSA) by Abt Associates, Inc., and Advocates for Human Potential, Inc., under contract number 280-04-0095 and Westat under contract number 270-03-6005, with SAMHSA, U.S. Department of Health and Human Services (HHS). Pamela Fischer, Ph.D., and Crystal Blyler, Ph.D. served as the Government Project Officers. Disclaimer The views, opinions, and content of this publication are those of the authors and contributors and do not necessarily reflect the views, opinions, or policies of the Center for Mental Health Services (CMHS), SAMHSA, or HHS. Public Domain Notice All material appearing in this document is in the public domain and may be reproduced or copied without permission from SAMHSA. Citation of the source is appreciated. However, this publication may not be reproduced or distributed for a fee without the specific, written authorization from the Office of Communications, SAMHSA, HHS. Electronic Access and Copies of Publication This publication may be downloaded or ordered at http://store.samhsa.gov. Or, please call SAMHSA’s Health Information Network at 1-877-SAMHSA-7 (1-877-726-4727) (English and Español). Recommended Citation Substance Abuse and Mental Health Services Administration. Consumer-Operated Services: The Evidence. HHS Pub. No. SMA-11-4633, Rockville, MD: Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services, 2011. Originating Office Center for Mental Health Services Substance Abuse and Mental Health Services Administration 1 Choke Cherry Road Rockville, MD 20857 HHS Publication No. SMA-11-4633 Printed 2011 The Evidence The Evidence introduces all stakeholders to the research literature and other resources on consumer-operated services. This booklet includes the following: Consumer- A review of research literature; Operated A detailed bibliography for further reading; and References for the citations presented throughout the KIT. Services This KIT is part of a series of Evidence-Based Practices KITs created by the Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services. This booklet is part of the Consumer-Operated Services KIT, which includes seven booklets: How to Use the Evidence-Based Practices KITs Getting Started with Evidence-Based Practices Building Your Program Training Frontline Staff Evaluating Your Program The Evidence Using Multimedia to Introduce Consumer-Operated Services What’s in The Evidence Consumer-Operated Services: A Review of the Research Literature ........................................................................ 1 Consumer- Selected Bibliography ........................................................ 35 References ........................................................................ 43 Operated Acknowledgments ............................................................. 57 Services The Evidence Consumer-Operated Services: A Review of the Research Literature Funders are increasingly demanding Introduction evidence that program models work. In response, consumer-operated Throughout history, peer support programs must continue to demonstrate has helped people achieve health and their role in supporting people’s recovery. wellness. The consumer-operated service model of peer support is now being This paper reviews the literature on recognized nationally and internationally. consumer-operated services. It explores As noted in the New Freedom the history, principles, and program types Commission on Mental Health’s as well as relevant research studies of final report Achieving the Promise: effectiveness. In this review, a consumer- Transforming Mental Health Care in operated service is defined as “a peer-run America (2003): “Recovery-oriented program or service that is administratively services and supports are often successfully controlled and operated by the mental provided by consumers through consumer- health consumers and emphasizes self- run organizations … Studies show that help as its operational approach” (U.S. consumer-run services and consumer- Department of Health and Human providers can broaden access to peer Services, 1998). support, engage more individuals in traditional mental health services, and serve as a resource in the recovery of people with a psychiatric diagnosis” (p. 37). The Evidence 1 COS: A Review of the Research Literature Consumer-operated services are fully independent, In addition, 66 publications were suggested for separate, and autonomous from other mental inclusion by core group members and colleagues health agencies, with the authority and responsibility after hand searches of private files, conference for all oversight and decision-making on governance, presentations, and a variety of reports and financial, personnel, policy, and program issues documents from multiple sources. These were (Zinman, 1987; Solomon, 2004; Van Tosh & del vetted for relevance, appropriateness, and quality Vecchio, 2001; Holter, Mowbray, Bellamy, and included as appropriate. MacFarlane, & Dukarski, 2004). To a large degree, consumer-operated programs History: The development of consumer- are staffed by individuals who have received operated services mental health services (Mowbray & Moxley, 1997; Goldstrom et al., 2004, 2006). In this literature The story of consumer-operated services begins review, the term “consumer” is defined simply as an with people: their lives, their psychiatric disabilities, individual who identifies as having been diagnosed their coping, and their recovery. It starts with what with a psychiatric disorder and/or who uses or has they did to get along, to get better, to help, or be used mental health services (Solomon, 2004). helped by others. From a past of often coercive and dehumanizing treatment, peer-run services emerged based on the insight that the “dynamics Methodology of recovery are grounded in a person’s mind and body—in his or her hopes, needs, preferences, A comprehensive list of 144 published studies and choices” (Campbell, 2005). of consumer-operated services and supplemental materials was developed based on the thorough search of key databases and the collection of other The legacy of peer support pertinent materials by project participants. The legacy of peer support rests on written However, the methodological rigor used to identify and oral accounts by former patients and on and categorize citations was limited by the many the record of their accomplishments establishing possible source locations, the replication of articles self-help organizations and other groups in multiple electronic databases, and the inclusion of promoting empowerment. many inappropriate articles in preliminary literature searches due to inconsistent study labeling. There are more than 300 first person accounts of madness published in the English language Through an initial computerized library search, (Hornstein, 2002). These accounts are truly 201 articles, book chapters, and reports were witness testimony by experts—the people who identified in the published literature. Seven social experience mental illness. They are an important science databases were searched for the years part of the legacy of peer support (Deegan, 2004). 1970-2005. Each search involved cross-referencing “mental health,” “research,” and “evaluation” with The earliest accounts by former inmates urging peer,” “consumer program services,” and “mutual reform originated in the United Kingdom in the support.” A second search, crossing “research” early 18th century (Defoe, 1728). In America, early and “evaluation” with “self-help,” produced 606 first person accounts included those by Elizabeth citations. A working literature review database with Stone (1842), Isaac Hunt (1851), Elizabeth Packard 115 entries was developed and subdivided into the (1879), and Clifford Beers (1907). Most of these following categories: research (38), theory (10), accounts reached beyond individual concerns description (23), historical (19), supplemental (17), and mobilized former patients, the general public, and general (8). COS: A Review of the Research Literature 2 The Evidence legislatures, policymakers and even the professions The history of ex-patients organizing to support to improve services for all people diagnosed with each other and speak for themselves began in mental disorders. These examples demonstrate England in 1838. Following his confinement that even in its earliest manifestations, peer in a madhouse, Richard Paternoster placed an support has always been rooted in the belief advertisement in the London Times for ex-inmates that helping oneself involves helping others. to join in a campaign to reform the madhouse system. He was joined by four former inmates Oral traditions have been critical in keeping alive who in 1845 named their fledgling organization the legacy of peer support. For example, consider the Alleged Lunatics’ Friend Society. The group the story of Jenni Fulgham, an African American remained active for nearly 20 years and boasted woman living in the small town of Zuni, Virginia. 60 members at its height. The organization’s mission In 1947, she was admitted to the racially segregated was to visit individual inmates,
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