A. Specific Aims:

The ultimate purpose of this project is to collect, review, analyze, and synthesize the published and unpublished literature on recovery in the field of mental health, particularly from the perspective of consumers. One result will be an article to be included in Mental Health 1998. An additional result is the use of this material in the NTAC Planning Council Training in Omaha, Nebraska in April, 1998.

The concept of recovery, long a central focus in the substance abuse field, is now coming to the forefront in mental health. In review of the growing literature on recovery in the field of mental health, it is found that much of the study and writing done to date is an effort to describe and define recovery. While prior outcome studies have included symptom reduction and improvement in quality of life dimensions, no studies have been found to date - either published or unpublished - in which there have been efforts to develop and test measures of recovery over time as defined by consumers/survivors.

The definitions of recovery include the following concepts. Recovery is an ongoing process. It is a continuing, deeply personal, individual effort, and leads to growth, discovery, and the change of attitudes, values, goals, and perhaps roles. It involves hope, courage, adaptation, coping, self esteem, confidence, a sense of control or free will, personal empowerment, and spirituality/philosophy which gives meaning to life. It may also include constructive anger, advocacy for self and others, acceptance of personal responsibility, and asking for and accepting help. It includes physical and mental health, and economic and interpersonal well-being. It is accomplished one step at a time. It involves development of new meaning and purpose in life. While it is deeply personal, and can be done only by the individual who is recovering, a necessary ingredient is the support and inter-connectedness with others. These 'others" may be family members, professionals, colleagues, and both consumer and non-consumer friends.

The aims of this project are as follows:

1. Develop a comprehensive review and synthesis of the recovery literature, focusing particularly on studies and articles where there has been consumer involvement. This will include a compendium of studies/projects which are in process or not published.

2. Prepare an article to be included in Mental Health 1998.

3. Prepare a presentation for the NTAC Planning Council Training

4. Prepare a presentation for the MH Statistics Conference.

The following summary is the beginning of this project.

Until recently, severe mental illness was generally considered to be a life long condition. Healing and recovery were invisible to those who only saw people when their symptoms were most severe, and when they were enrolled in the service system. Thus, while the concept of recovery is common in the field of physical illness and disability, and also from the addiction perspective, it has not been often used in the definition and measurement of mental health outcomes.

The concept was first introduced in the writings of consumers/survivors (Deegan, 1996, 1988; Houghton, 1982; Leete, 1989; Lovejoy, 1982; McDermott. 1990; Stocks, 1995: Unzicker,1989; The Voice 1995: Weingarten, 1994).

Through the leadership of consumers/survivors and professionals who believe in recovery, dialogues between consumers/survivors and professionals to understand and define recovery began to be conducted. Pioneer Dialogues between consumer/survivors, providers, and family members conducted in Florida and between State Commissioners of Mental Health and consumer/survivors (Loder, 1993) were initial efforts. These were not specifically focused on recovery, but more on the interactions which assist consumers/survivors to maintain and increase their wellness, which is recovery.

In New York, a forum for psychiatrists and consumers/survivors was created to exchange perspectives, develop a shared vision of recovery and consider ways in which treatment relationships could be more collaborative. Participants indicated that recovery is an active, ongoing, and individual process; it relates not only to the experience of symptoms, but to secondary assaults of stigma and abuse; hope is the most fundamental factor in recovery; a sense of control or free will are also critical; self directed coping strategies are effective and can be learned; maintaining or developing connections to valued activities and people is critical; and finding meaning in ones experience of mental illness is important (Blanch et al, 1993).

In 1994, CMHS and the Ohio Department of Mental Health sponsored a National Forum on recovery for Persons with Severe mental illness. Professionals, consumers/survivors, and family members presented papers and discussed the aspects of recovery. There seemed to be a general consensus "that recovery is an internal, ongoing process requiring adaptation and coping skills, promoted by social supports, empowerment, and some form of spirituality or philosophy, that gives hope and meaning to life... Consumers/survivors felt that recovery was a deeply personal experience and an ongoing process. Recovery, they said, involves hope and courage and is accomplished one step at a time according to individual abilities and goals." (ODMH, 1994) When this forum was replicated throughout Ohio, nine major themes emerged: jobs, power and control (empowerment), peer support, family support, community involvement, access to resources, education, and clinical roles and relationships. (CSP Advisory Committee, 1995)

Anthony (1993) summarizes definitions of recovery by consumers/survivors: "Recovery is described by consumers/survivors as a deeply personal, unique process of changing one's attitudes, values, feelings, goals, skills, and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by illness. Recovery involves the development of new meaning and purpose in one's life as one grows beyond the catastrophic events of mental illness."

Research in the measurement of recovery is relatively new and results vary, in part, due to the way the concept is operationalized. Research by mental health service recipients has found that the healing and recovery process is correlated with self-help and contextual factors, rather than the service system interventions (Markowitiz et al, 1996). A model was developed using the person's life as the organizing construct rather than focusing on pathology (DeMasi et al, 1996). It explains the phenomenon in terms of three areas of well-being: Health (physical health and mental health), Psychological, (self esteem, hope, coping, and confidence), and Social (economic and interpersonal quality of life). Using confirmatory factor analysis the structure of the model was tested and supported. The results indicate that recovery spans beyond the mental health systems, is obtainable from a combination of support services, and emphasizes the importance of a partnership between clinician and client, between traditional and alternative services. DeMasi and colleagues (1996) used a number of scales in this study: The Colorado Symptom Index (Coen, Wilson, Shern & Bartsch, 1989) to measure symptoms of mental illness; Rosenberg's (1965) Self-Esteem Scale; The Mental health Confidence Scale (Carpinello, Knight, & Markowitz 1995); the Ways of Coping Scale (Folkman & Lazarus, 1988); the Hope Scale (Snyder, 1989), and some items to measure economic and interpersonal quality of life.

Several efforts which are still underway point to how a recovery orientation could guide both the vision of a mental health service system and provide the means to evaluate the quality of care.

The Crisis Hostel Project (Jeanne Dumont, Project Director), a consumer-run research demonstration project, operated an alternative to psychiatric hospitalization with program and research components to facilitate healing and recovery, and study key outcomes such as the incidence of psychiatric hospitalization, individual empowerment, and satisfaction with services. As a part of the project, a Healing Scale was developed to examine these outcomes using concept mapping.

In Ohio a consumer-run business was asked by a county mental health board to develop and implement an evaluation strategy to identify strengths and weaknesses in the county mental health system. All of the consumers/survivors involved agreed that recovery was important, and generated a list of indicators, as well as ways professionals could be evaluated based on their impact on the recovery process - both positive and negative. These indicators, used in a pilot study in Ohio with service recipients and in Maine with consumers/survivors who had been admitted to the state institution at least once in the last seven years, were rated from most important to least important similarly by both groups. (Ralph, Lambric, & Steele, 1996; Ralph & Lambert, 1996) The top four were the same top four rated by Maine consumers/survivors. These four are: (a) The ability to have hope; (b) Trusting my own thoughts; (c) Enjoying the environment; and (d) Feeling alert and alive.

In Missouri, in the Peer Outcomes Protocol Project (Jean Campbell, Project Director), items to measure recovery are included in the Protocol which is being developed to measure the effects of self help groups and programs. Pilot testing is currently underway.

There is currently some work in Ohio (Steffan, 1996) on the development and study of measures of recovery. This work includes the use of a number of scales, including one developed by the authors called Adoption of Recovery Attitudes.

Daniel Fisher, Executive Director and Patricia Deegan of the National Empowerment Center in Massachusetts, are conducting in-depth interviews with consumers/survivors who are themselves recovered, to identify further dimensions of recovery.

A questionnaire containing questions about the definition, dimensions, and factors which promote and deter recovery was distributed at the 1997 Mental Health Statistics Conference, with a small sample return. It was also distributed to consumers/survivors in Nebraska, and completed by about 50 of them. It is in the process of review and analysis.

John Hornik, past president of the MHSIP Ad Hoc Advisory Committee is project director of a federally funded housing initiative. He has initiated some exploration in the impact that staff and environment have on recovery. Ruth Ralph is working with him in developing measures to test this concept.

While there are efforts to identify and measure the various dimensions of recovery, a final, definitive, tested instrument to measure recovery over time has not been found. A great deal of time and effort went into the development of the MHSIP Consumer-Oriented Mental Health Report Card (CMHS, 1996). The domains measured by the Report Card are access, appropriateness, outcomes, and prevention. While these are important measures of outcome, they do not address the complex issues of recovery. It is the intention of this project to search out any efforts at developing measurement tools for recovery, and the results of testing such tools. Studies which describe, define, and measure recovery from the consumer/survivor viewpoint will be the focus of this literature review.

C. Method

1. Collect published articles on recovery. This will be done through research of library databases, including the KEN and other websites.

2. Contact NASMHPD and all state mental health departments and their Office of Consumer Affairs to find out what recovery studies are completed or underway, and asking for (a) copy of any written work, (b) name & telephone # of contact person

3. Compile a comprehensive bibliography

4. Write a review and synthesis of the literature (both published and unpublished).

5. Prepare materials for presentation at various training and other conferences (e.g. MH Statistics Conference, Southern Regional MH Statistics Conference)

Products which will be generated by this project are:

1. An article which reviews the literature on recovery, and synthesizes the concepts in terms of implications for mental health services.

2. A comprehensive bibliography of the recovery literature to date, including a compendium of projects which are underway.

3. A presentation and paper for the NTAC Planning Council training

4. A presentation and paper for the MH Statistics Conference.

SELECTED RECOVERY BIBLIOGRAPHY

Jean Campbell, Ph.D., Research Assistant Professor
Missouri Institute of Mental Health

Ruth 0. Ralph, Ph.D. Research Associate
Edmund S. Muskie School of Public Service
University of Southern Maine

Anthony, W. (1991) Recovery from mental illness: The new vision of smices researchers. Innovation and Research ](I), 13-14,

Anthony, W. (1993) Recovery from mental illness: The guiding vision of the mental health system in the 1990s. The Psychosocial Rehabilitation Journal 16(4), P. 11-24.

Blanch, A., Fisher, D., Tucker, W., Walsh, D. and J. Chassman (1 993). Consumer-practitioners and psychiatrists share insights about recovery and coping. Disability Studies Quarterly 13(2), p, 17-20.

Beale, V. and T. Lambric.(1995) The recovery concept: Implementation in the mental health system. Ohio Department of Mental Health: Columbus.

Brier, A. and J. Strauss. (1984). The role of social relationships in the recovery from psychotic disorders. American Journal of Psychiatry; 141, p.949-955.

Campbell J. and R. Sehraiber. (1988). The Well-Being Project: Mental health clients speak for themselves, California Department of Mental Health - Sacramento, CA.

Carr, V. (1988). Patient's techniques for coping with schizophrenia. British Journal of Medical Psychology 66, p.339-52.

Davidson, L. and J. Strauss (1995). Beyond the biopsycholosocial model: Integrating disorder, health. and recovery. Psychiatry 38, p.44-55.

Deegan, P. (1988). Recovery; The lived experience or rehabilitation. Psychosocial Rehabilitation Journal 11(4), p.11-19.

Deegan, P. (1991) Recovery, rehabilitation and the conspiracy of hope. A keynote address, presented at the Northeast Regional Training Institutes and Conference on Housing and Supports, Burlington, VT.

Deegan, P. (1996). Recovery as a journey of the heart. Psychiatric Rehabilitation Journal 19 (3) p. 91-97.

DeMasi, M., Markowitz, F., Videka-Sherman, L., Solka, C., Knight, E., and S. Carpinello. (1996). Specifying dimensions of recovery. Paper presented at the 6th Annual Conference on State Mental Health Agency Services Research and Program Evaluation, Arlington, VA,

Fisher, D. (1992) humanizing the recovery process. Resources, 4(1). 7-8

Heinrichs, D., Cohen, B. and W. Carpenter. (1985). Early insight and the management of schizophrenia decompensation. The Journal of Nervous and Mental Disease 173(3), p.133-138.

Dumont, J.(1995), The Crisis Hostel Project: A review of the literature and bibliography. Ithaca, N.Y., (unpublished manuscript).

Harding, C., Zubin, J. and J. Strauss. (1987). Clironicity in schizophrenia: Fact, partial fact, or artifact? Hospital and Community Psychiatry 38(5), p, 477-485,

Houghton, J. (1982). Maintaining mental health in a turbulent world. Schizophrenia Bulletin 8, p.548-552.

Leete, E. (1989). How I perceive and manage my illness - Schizophrenia Bulletin 15, p.197-200.

Lovejoy, M. (1992). Expectations and the recovery process. Schizophrenia Bulletin 8, p.605-609.

Markowitz, F., DeMasi, M., Knight, E. and L. Solka, (1996), The role of self-help in the recovery process. Paper presented at the 6th Annual Conference on State Mental Health Agency Research and Program Evaluation, Arlington, VA.

McDermott, D, (1990). Transforming depression. The Journal 1(4), p.13-14.

Ohio Department of Mental Health (1994) Recovery: The new force in mental health. A set of articles from consumers, psychiatrists, and mental health administrators. Ohio Department of Mental Health, Columbus, OH.

Ralph, R., Lambric, T. and R. Steele, (1996). Recovery issues in a consumer developed evaluation of the mental health system. Paper presented at the 6th Annual Conference on State Mental Health Agency Services Research and Program Evaluation, Arlington, VA.

Stocks, M. (1995). In the eye of the beholder. Psychiatric Rehabilitation Journal 19(1), P.89-91.

Unzicker, R. (1989). On my own: A personal journey through madness and re-emergence. Psychological Rehabilitation Journal 13, p.70-77

Emmel, W. (1995), Recovery: The only way to go, The Voice: The Newsletter of the Coalition of Consumer Self-Advocates & Oasis Drop-In Center, Providence. RI.

Weingarten, R. (I 994). The ongoing processes of recovery. Psychiatry 57. p.369-375.