201003_psychiatry

israel journal of

psychiatry NEW TREATMENT FOR

ISSN: 0333-7308

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Editorial: A decade of the Israeli psychiatric rehabilitation law David Roe, Max Lachman and Kim T. Mueser

Schizophrenia and Bipolar I Disorder 1

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Do Persons with Severe Mental Illness who Consume the Psychiatric Rehabilitation Basket of Services in Israel Have Better Outcomes than Those Who Do Not? David Roe, Nomi Werbeloff, and Marc Gelkopf

Volume 47, Number 3, 2010 Israel Journal of Psychiatry and Related Sciences

Proven Efficacy in all Symptom Clusters 2,3,4,5

Vol. 47 - Number 3 2010

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Promises and Pitfalls on the Road to a Mental Health Reform in Israel Uri Aviram

195

My life as a Mental Health Consumer Elliot

198

Australian Mental Health Consumers’ Contributions to the Evaluation and Improvement of Recovery-oriented Service Provision Sarah L. Marshall, Lindsay G. Oades, and Trevor P. Crowe

206

Measuring Recovery in Mental Health Services Mike Slade

213

Applying Stages of Change Models to Recovery from Serious Mental Illness: Contributions and Limitations Larry Davidson, David Roe, Raquel Andres-Hyman, and Priscilla Ridgway

ABI-08-10

References: 1. Aripiprazole (Abilify®) Physician Prescribing Information Leaflet approved by Israeli Ministry of Health. 2. Kane JM et al. Efficacy and Safety of Aripiprazole and haloperidol vs placebo in patients with schizophrenia and schizoaffective disorder. J Clin Psychiatry ,2002; 63(9):763-771. 3. Kasper S et al. Efficacy and safety of aripiprazole vs haloperidol for long-term maintenance treatment following acute relapse of schizophrenia. Int. J Neuropsychopharmacol ,2003; 6 (4):325-337. 4. Volavka J et al; Efficacy of aripiprazole against hostility in schizophrenia and schizoaffective disorder: data from 5 double blind studies. J Clin Psychiatry ,2005; 66(11):1362-1366. 5.

Lieberman JA. Dopamine partial agonist: A new class of antipsychotic. CNS Drugs ,2004; 18(4):251-267.

Biotis is an exclusive representative of selected brands of BMS Biotis Ltd. 22 Hamelacha St. P.O.Box 11372 Rosh Ha’Ayin, 48091 Israel. Tel: +972-3-9002005. Fax: +972-3-9002029 www.biotis.co.il Please refer to Abilify approved Physician Prescribing Information

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An Examination of Stress and Coping among Adults Diagnosed with Severe Mental Illness Stephanie Robilotta, Ecena Cueto and Philip T. Yanos

A decade of the Israeli psychiatric rehabilitation law

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Supervision and the Process of Negotiating Recovery Hanoch Yerushalmi

israel journal of

psychiatry and related sciences EDitor

David Greenberg DEPUTY EDITORS

David Roe Rael Strous Gil Zalsman

Book reviews editor

Yoram Barak PAst Editor

Eli L. Edelstein Founding Editor

Heinz Z. Winnik Editorial Board

Alean Al-Krenawi Alan Apter Elliot Gershon Talma Hendler Ehud Klein Ilana Kremer ltzhak Levav Yuval Melamed Shlomo Mendlovic Ronnen Segman Eliezer Witztum Zvi Zemishlany International Advisory Board

Yoram Bilu Aaron Bodenheimer Carl Eisdorfer Julian Leff Margarete Mitscherlich-Nielsen Peter Neubauer Phyllis Palgi Leo Rangell Melvin Sabshin Robert Wallerstein Myrna Weissman

A decade of the Israeli psychiatric rehabilitation law 164 > Editorial: A decade of the Israeli psychiatric rehabilitation law David Roe, Max Lachman and Kim T. Mueser

166 > Do Persons with Severe Mental Illness who Consume the Psychiatric Rehabilitation Basket of Services in Israel Have Better Outcomes than Those Who Do Not? David Roe, Nomi Werbeloff, and Marc Gelkopf

171 > Promises and Pitfalls on the Road to a Mental Health Reform in Israel Uri Aviram

The Official Publication of the Israel Psychiatric Association Vol. 47 - Number 3 2010

195 > My life as a Mental Health Consumer Elliot

198 > Australian Mental Health Consumers’ Contributions to the Evaluation and Improvement of Recovery-oriented Service Provision Sarah L. Marshall, Lindsay G. Oades, and Trevor P. Crowe

206 > Measuring Recovery in Mental Health Services Mike Slade

213 > Applying Stages of Change Models to Recovery from Serious Mental Illness: Contributions and Limitations Larry Davidson, David Roe, Raquel Andres-Hyman, and Priscilla Ridgway

222 > An Examination of Stress and Coping among Adults Diagnosed with Severe Mental Illness

183 > Commentary Howard H. Goldman

185 > Commentary

Stephanie Robilotta, Ecena Cueto and Philip T. Yanos

Julian Leff

232 > Supervision and the Process of Negotiating Recovery

187 > Commentary Mordechai Shani

Hanoch Yerushalmi

189 > Commentary Gaby Shefler

192 > Author’s response Uri Aviram

Hebrew Section

239 > Abstracts

Assistant Editor

Joan Hooper

Marketing: MediaFarm Group

+972-77-3219970 23 Zamenhoff st.

Tel-Aviv 64373, Israel

amir@mediafarm.co.il www.mediafarm.co.il

Stark Winter Gershon Mendlovitz

Gershon Mendlovitz, an early participant in the rehabilitation basket, completed a diploma in computer engineering, works half-time, and is studying English Literature at the Hebrew University. In the picture: “Trees without leaves, cold, yet together and ordered, the world of winter.

Like Keats, nature reflects the state of being. There is also a looking forward to the spring, like Eliot’s ‘The Waste Land’ that became barren because of the Fisher King, but is going to grow back.”

Isr J Psychiatry Relat Sci - Vol 47 - No.3 (2010)

Editorial: A decade of the Israeli psychiatric rehabilitation law Israel is celebrating a decade since the legislation of the Rehabilitation of the Mentally Disabled in the Community Law (RMD) (1). The goal of this law is to enable persons with severe mental illness (SMI) to “achieve the maximum degree of functional independence and the highest possible quality of life, while preserving their dignity” (1).

The Rehabilitation Law is innovative and progressive in many ways. First, it grew out of partnerships and collaborations formed by such diverse stakeholders as mental health professionals, family organizations, consumers, human right advocates and policy makers, under the political leadership of Tamar Gozhansky, Israeli MP. Second, it stresses the right of persons with SMI to a defined “basket” of accessible psychiatric rehabilitation services geared to support their efforts to achieve valued social roles in the community. Third, it led to the establishment of the National Council for Rehabilitation of Mentally Disabled in the Community, which consults to the Israeli Minister of Health in shaping policy.

This second part of two special issues of The Israel Journal of Psychiatry and Related Sciences devoted to Psychiatric Rehabilitation is scheduled to coincide with the 10th anniversary of the passage of this law. During the last decade in Israel, the number of inpatient psychiatric beds (per population) declined by approximately 70%, the number of persons using psychiatric rehabilitation services increased four-fold (currently approaching 16,000) and the dedicated budget for psychiatric rehabilitation increased ten-fold (2). The variety and comprehensiveness of rehabilitation services have increased accordingly in several areas including housing, education, employment and others, representing both internationally recognized models as well as local innovative initiatives. For example, the Rehabilitation Law offers supported employment and case management, which are internationally recognized evidence-based practices for persons with SMI. Additional models and interventions such as the “clubhouse,” Illness Management and Recovery (IMR), and Family Psychoeducation which were not outlined in the law, have since been adapted from abroad and successfully implemented in Israel, 164

while many local rehabilitation models and interventions have also been developed.

Alongside these impressive accomplishments there remain notable challenges at the onset of the second decade of the law. Coordination between different elements of the system (treatment, rehabilitation, physical health, welfare and others) is often lacking, hindering the continuity of care. The impact of services on desired outcomes and the quality of service provision is not routinely evaluated and little is known about the characteristics of those individuals consuming the services, their needs and whether the rehabilitation services they consume promote their recovery process or functional outcomes. Finally, despite the rapid increase in the number of persons receiving psychiatric rehabilitation services, it is estimated that they comprise less than a quarter of those who are eligible for the basket of services and who could presumably benefit from them. While to date there has been no systematic effort to investigate this puzzling finding, possible explanations might be not being aware of these services, not experiencing them as accessible, tailored to their needs or culturally sensitive, the barrier of stigma or structural issues which hinder referrals to the psychiatric rehabilitation basket of services.

Clearly, there is still much work to be done. However, the next decade is ripe with opportunities to further achieve the vision of the Rehabilitation Law. We end this editorial with three hopes for the next decade in Israel of this law: First, we hope that the mental health care system will become integrative and characterized by accessible, effective and culturally competent services aimed primarily and explicitly at promoting recovery. It is essential that the rehabilitation services be culturally tailored to all minority groups as well as those with serious behavior disorders, so-called organic brain problems and co-occurring psychiatric and substance abuse problems.

Second, we hope to learn and benefit from the process of developing and implementing new services. By

David Roe ET AL.

seeking to understand the impact of new services we will be able to improve them, and develop the requisite body of knowledge, skills and values needed to train and supervise providers so that services are delivered in an accountable manner.

Finally, we hope that quality of care and efficiency will gain greater focus. Powerful means for achieving these goals are now widely available, including the assessment of the fidelity of the services and the monitoring of outcomes. Hopefully, these innovations will be gradually introduced into practice during this coming decade.

Reflecting upon the achievements of the Rehabilitation Law on its 10th anniversary provides many reasons to be proud of what has been accomplished as well as an opportunity to recognize pitfalls and envision future

progress. Hopefully, on the 20th anniversary of the law, a new generation of psychiatric rehabilitation experts will be guest editors of a special issue of this journal and will report the progress made during its second decade.

David Roe, Max Lachman and Kim T. Mueser   droe@univ.haifa.ac.il

Guest editors References 1. Rehabilitation of the Mentally Disabled in the Community Law of 2001 (RMD). Israel Law Code, 1746. Jerusalem: Ministry of Justice, 2001 (in Hebrew).

2. Aviram U. Promises and pitfalls on the road to a mental health reform in Isr J Psychiatry Relat Sci 2010; 47: 171-194.

Call for submissions The Israel Journal of Psychiatry is planning special sections on the following subjects: Pediatric bipolar disorder - Culture and psychiatry Ethics in psychiatry - Imaging in psychiatry Paraphilias - Psychiatry and conflict Sexuality in psychiatry Submissions on these and any other area related to mental health should be prepared according to the information for contributors available online at: http://www.psychiatry.org.il/journal/ Submissions should be sent to the editor, David Greenberg, MD, at israeljp@huji.ac.il

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Isr J Psychiatry Relat Sci - Vol 47 - No.3 (2010)

Do Persons with Severe Mental Illness who Consume the Psychiatric Rehabilitation Basket of Services in Israel Have Better Outcomes than Those Who Do Not? David Roe, PhD, Nomi Werbeloff, PhD, and Marc Gelkopf, PhD Department of Community Mental Health, Faculty of Social Welfare and Health Sciences, University of Haifa, Haifa, Israel

ABSTRACT Background: Since the implementation of the legislation of the Rehabilitation of the Mentally Disabled in the Community Law a decade ago, an increasing number of people have been receiving the psychiatric rehabilitation "basket of services,” yet the impact of these services has barely been studied. The purpose of the present study is to examine whether people with severe mental illness in Israel who consume psychiatric rehabilitation services report better outcomes than people with severe mental illness who are eligible and have applied for psychiatric rehabilitation services but have not yet utilized them.

Method: 1,191 persons with severe mental illness (595 psychiatric rehabilitation service users and 596 nonusers) completed face-to-face interviews. Differences in quality of life, general satisfaction and psychiatric symptoms between psychiatric rehabilitation service users and non-users were examined using Analysis of Covariance controlling for the potential confounding effects of age and marital status.

Results: Adjusted comparisons of quality of life, general satisfaction and psychiatric symptoms revealed that psychiatric rehabilitation service users had better outcomes than non-users: they reported better quality of life and greater satisfaction alongside fewer psychiatric symptoms. The most striking difference between the groups was found in the domain of employment and income, with non-psychiatric rehabilitation service users scoring 0.9 effect sizes below psychiatric rehabilitation service users.

Conclusion: The current study, based on a relatively large sample, provides support for the effectiveness of the psychiatric rehabilitation "basket of services.”

Future studies including clinicians’ ratings of more objective aspects of functioning may provide a broader picture of the association between psychiatric rehabilitation service utilization and outcome.

Introduction The rapid development of psychiatric rehabilitation over the last two decades has affected services in several countries (1) including Israel (2). Psychiatric rehabilitation refers to adapting and applying rehabilitation principles and practices used with a variety of disabilities to help clients cope and recover from severe mental illness (SMI) (3). Since the implementation of the legislation of the Rehabilitation of the Mentally Disabled in the Community Law (RMD) a decade ago (4), an increasing number, currently estimated at nearly 16,000 people, have been receiving the psychiatric rehabilitation “basket of services” (2). The “basket of services” attempts to address the key disadvantages consumers often face by providing them with services that focus on building skills and supports in domains such as work, recreation, education, social life and housing to improve their opportunity to pursue valued social roles in the community. For example, residential services consist of flexible and need tailored support to persons living in rented and sheltered apartment as well as hostels.

Address for Correspondence: David Roe, PhD, Department of Community Mental Health, Faculty of Social Welfare and Health Sciences, University of Haifa, Mount Carmel, Haifa, 31905, Israel. droe@univ.haifa.ac.il

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David Roe et al.

Vocational services include sheltered workshops and assistance in acquiring vocational skills and competitive employment. The services specified by the legislation had no explicit standards or criteria for selection, but rather were proposed on the basis of the available professional, clinical and personal experience at the time the legislation was prepared (5).

Recent efforts to address the general oversight of the mental health service system have generated a growing focus on watchwords such as “system quality,” which focuses on the outcomes of interventions, and “accountability,” which refers to the adherence to an intervention (6). Both approaches emphasize the importance of applying practices found to be effective across a variety of psychiatric rehabilitation and mental health systems through knowledge transfer, dissemination and integration (7). As a result, mental health services are now expected to be outcome-oriented and the assessment of client outcomes is becoming a more common aspect of mental health service provision (8).

Therefore, psychiatric rehabilitation and mental health systems have directed increasing efforts to investigate the effectiveness of the services they provide. Notable examples of efforts to move in this direction have been reported in different countries. In the United States, the Ohio Mental Health Consumer Outcomes System includes regular assessments of clinical status, functioning, quality of life and empowered decision making. In Maryland, the Outcomes Measurement System (OMS) has been developed as a tool for tracking how well the people served in Maryland’s public mental health system do over time. In Australia, both clinician and service user-rated measures are being introduced into routine practice nationally (9). Italy has developed and successfully implemented the South-Verona Outcome Project (SVOP), an ongoing assessment of a range of outcome domains, including psychopathology, disability, need for care, satisfaction, burden on the caregivers, quality of life and social functioning (10). Outcome monitoring is not a single occurrence but rather a process of systematic, repeated assessments that can assist in planning treatment and tracking progress as well as provide consumers, family members, policy makers and funders with vital tools for informed decision making.

In Israel, consumers are assumed to have benefited from the newly developed psychiatric rehabilitation basket of services (PRS), yet the impact of these services has barely been studied. In one follow-up study of 80,000 people who had been discharged from psychiat-

ric hospitals in Israel between the years 1998-2003 and who had a prior psychiatric hospitalization that lasted more than a year, lower readmission rates were found for those who received PRS (11). While these findings are encouraging, the purpose of developing PRS in Israel was not solely to decrease hospitalization rates, but rather to promote “rehabilitation and community inclusion… (and) to achieve the highest possible level of independent functioning and quality of life” (11).

The purpose of the present study is to examine whether people with SMI in Israel who consume psychiatric rehabilitation services report better outcomes on domains targeted in the legislation such as employment, residence, leisure and social life compared to consumers who are eligible and have applied for PRS but have not yet utilized them.

Method The data used in the current study were drawn from the baseline assessments conducted as part of the larger study designed to assess the effectiveness of a new case management service. From June 2008 to February 2010, 1,573 rehabilitation service consumers from three districts in Israel (Central north, Central south & Haifa) were interviewed using a structured interview designed for that study. Eligibility for rehabilitation services is determined by the District Rehabilitation Committee, requiring a minimum of 40% psychiatric disability. The level of disability was determined by a medical committee, based on information obtained by specialists and in accordance with the National Insurance regulations.

Each participant was given a detailed explanation of the study purpose and signed an informed consent form.

The interviews were conducted in person, took 20-40 minutes each and the participants were paid NIS35 ($10) for their time. The study was approved by the local institutional review board.

Measures The study interview was constructed after a comprehensive review of the existing instruments assessing outcomes in mental health. In addition, the researchers, in cooperation with professionals from the RCPS and the Ministry of Health, identified key domains and relevant items for the study. The interview was designed to provide a multidimensional assessment of outcome and included the following areas: quality of life (QOL), gen167

outcome in Consumers of rehabilitation Basket

eral satisfaction from life, and psychiatric symptoms.

QOL was assessed in five domains: (1) Sports, Leisure & Studies; (2) Social & Community Life; (3) Family Life; (4) Housing; and (5) Employment & Income. Each domain evaluated both subjective and objective components of QOL. example of subjective items: To what degree do you feel a sense of belonging to your community / neighborhood? Example of objective items: During the last month, how often have you spent time with friends/ acquaintances (excluding immediate family members)?

Satisfaction was examined using a 7-item scale which assessed satisfaction from various aspects of life.

Psychiatric Symptoms were assessed using the Colorado Symptom Index (CSI; 12). The CSI is a brief 14-item self-report measure of psychiatric symptoms in which respondents report the frequency of various psychiatric symptoms they have experienced during the past month. The CSI is scored on a 5-point Likert-scale from (1) = not at all to (5) = every day. A mean of all 14 items is calculated, with higher scores indicating more frequent psychiatric symptoms.

Internal consistency scores of all scales used in this study are presented in Table 1. All scales showed reasonable to good reliability.

Table 1. Internal Consistency of Research Scales Quality of Life

Scale

Cronbach’s α

Sports, leisure & studies

0.64

Social & community

0.66

Family

0.64

Housing

0.43

Employment & income

0.66

General satisfaction

0.65

Colorado Symptom Index

0.86

Sample Of the 1,573 service consumers who were interviewed at baseline, full demographic data was available for 1,339 (85%). Among these, 595 had been consuming PRS for at least a year prior to the interview, 596 were at the early stages of applying for the PRS basket of services and were defined as non-PRS users and 148 were persons who had utilized rehabilitation services in the past but not in a continuous manner. We excluded the latter group from the analyses as they had consumed services in the past and thus could not be defined as “non-users,” 168

but had not consume services in a continuous manner in the year preceding the interview and thus could not be defined as “PRS users.” The final analytic sample for this study included 1,191 consumers of whom 50% were not PRS users and 50% were PRS users. The demographic data of both groups is presented in Table 2.

Table 2. Demographic Characteristics of the Study Groups Non-PRS users (n=596)

PRS users (n=595)

M (SD) Age

36.4 (11.8)

41.7 (12.7)

t, p 7.39, <.001 χ2, p

N (%) Gender Males

355 (59.6%)

356 (59.8%)

Females

241 (40.4%)

239 (40.2%)

Single

363 (60.9%)

399 (67.1%)

Other

233 (39.1%)

196 (32.9%)

central north

214 (35.9%)

182 (30.6%)

Central south

225 (37.8%)

227 (38.2%)

Haifa

157 (26.3%)

186 (31.3%)

0.01, 0.93

Marital status 4.89, 0.03

District 5.05, 0.08

Statistical Analyses

Quality of life domain composite scores were standardized to create a score with a range of 1-5 (higher scores indicate better QOL).

Differences in QOL, general satisfaction and psychiatric symptoms between new and known service consumers were initially examined using independent samples t-test. Next, analysis of covariance (ANCOVA) was used to test the differences between groups controlling for the potential confounding effects of age and marital status. Adjusted differences were expressed as effect sizes, calculated using Cohen’s formula (13).

SPSS version 17.0 software was used for all analyses.

Results Examining the demographic characteristics of the two study groups revealed no differences in the distribution of gender and district (Table 2). PRS users were on average five years older and included a greater proportion of single people than non-users.

Adjusted comparisons of QOL, general satisfaction and psychiatric symptoms found significant differences between PRS users and non-users on all mea-

David Roe et al.

sures (Table 3). Though most of the effect sizes suggest that the differences are weak-moderate (≤0.4), all the findings indicate that PRS users are doing better: they report better QOL and greater satisfaction alongside fewer psychiatric symptoms. A more striking difference between the groups was found in the domain of employment and income, with non-PRS users scoring 0.9 effect sizes below PRS users.

Table 3. Differences between Psychiatric Rehabilitation Service (PRS) Users and non-users Adjusted* difference between groups QOL Domain

Study participants

Sports, leisure & Studies

Non-PRS users PRS users

Social & community Family Residence Employment & income

General satisfaction Psychiatric symptoms

Mean (SD)

Effect Size

596

2.78 (0.66)

0.2

595

2.88 (0.64)

16.21, <.001

0.3

49.22, <.001

0.1

4.78, .03

0.2

28.98, <.001

0.9

479.26, <.001

0.4

76.0, <.001

0.2

30.92, <.001

N

Non-PRS users

594

3.12 (0.84)

PRS users

595

3.44 (0.78)

Non-PRS users

593

3.69 (1.0)

PRS users

595

3.80 (0.98)

Non-PRS users

594

3.29 (1.01)

PRS users

595

3.57 (0.85)

Non-PRS users

593

2.54 (0.74)

PRS users

595

3.53 (0.76)

Non-PRS users

594

3.28 (0.91)

PRS users

595

3.79 (0.84)

Non-PRS users

592

2.19 (0.83)

PRS users

593

1.88 (0.73)

F, p

*Adjusted for age and marital status

When separating objective and subjective QOL, all the differences between the groups remained significant. Interestingly, the main difference in the employment and income domain was driven by objective rather than subjective items (adjusted effect size=1.0, F=557.29, p<.001 vs. adjusted effect size=0.25, F=36.63, p<.001, respectively).

Discussion During the short history of psychiatric rehabilitation, many interventions have been developed to assist consumers acquire the skills and support to achieve personally meaningful and functional outcomes. Such outcomes include achieving satisfying social relation-

ships, residence and work related goals, improved quality of life and becoming valued members in their community of choice (14, 15). Several of the interventions have been subject to systematic research, which has provided empirical support for their effectiveness on the basis of which they have come to be considered evidence based practices (16, 17). For examples, family psycho-education, assertive community treatment, illness management strategies, social skills training and supported employment are considered to be evidence based practices (EBPs) because there is a sufficient body of rigorous research supporting their effectiveness (18).

The psychiatric rehabilitation “basket of services” in Israel includes a variety of services that have barely been subject to systematic investigation. The current study, based on a relatively large sample, provides support for the effectiveness of the basket of services. The quality of life across five different domains and general satisfaction from life were consistently higher among persons with SMI who consumed these services compared to those who did not. In addition, the frequency of psychiatric symptoms among PRS users was significantly lower. The finding of positive impact of the psychiatric rehabilitation basket of services is consistent with a previous study (11) conducted in Israel which found that people with SMI who consumed the basket of services demonstrated lower rehospitalization rates. It is also consistent with a large body of international research that has found psychiatric rehabilitation services to be effective (15, 16). Of note is the particularly strong difference between groups in the employment & income objective domain of QOL. This strong finding is of particular importance considering the central role of work in one’s rehabilitation and recovery process as it provides an opportunity for income, social interactions, a valued social role and the opportunity to acquire skills and gain self-esteem.

Importantly, there are limitations to this study. We do not have information about the actual rehabilitation services which were used or the extent to which they were utilized. Data on variables such as history of hospitalizations, family support and dual diagnoses, which are known to affect outcomes, were not available to us. The data was all based on self report which can be biased by the desire to please. Additionally, the cross-sectional nature of this study does not afford the opportunity to compare the groups over a period of time. Finally, the non-users included in this study were persons who were 169

outcome in Consumers of rehabilitation Basket

at the early stages of applying for the PRS basket of services and thus may not represent a large population of people with SMI who do not contact services.

Further research is necessary, including detailed repeated assessments and a more accurate characterization of the rehabilitation services that are actually being provided and the extent and manner in which they are consumed as well as more information about those consuming them. In addition, including clinicians’ ratings of functioning can provide a broader picture of the association between PRS utilization and outcome.

Finally, parallel repeated assessment of family members can provide valuable information as to whether family members also benefit from the basket of PRS. Acknowledgement: Preparation of this manuscript was supported by the Laszlo N. Tauber Family Foundation.

The authors wish to thank Adi Telem and Sigal Haimovich for their assistance in data collection and Amutat Moshe Hess and the Ministry of Health for their collaboration.

References 1. Slade M, Amering M, Oades L. Recovery: an international perspective.

Epidemiol Psichiatr Soc 2008;17:128-137.

2. Aviram U. Promises and pitfalls on the road to a mental health reform in Israel. Isr J Psychiatry Relat Sci 2010; 47:171-194.

3. Bond GR, Resnick SG. Psychiatric rehabilitation 2000. In: Frank RG, Elliot TR, Editors. The handbook of rehabilitation psychology. Washington, DC: American Psychological Association, 2000: pp. 235-258.

4. Rehabilitation of the Mentally Disabled in the Community Law of 2001 (RMD). Israel Law Code, 1746. Jerusalem: Ministry of Justice, 2001 (in Hebrew).

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5. Roe D, Hasson-Ohayon I, Lachman M, Kravetz S. Selecting and implementing evidence-based practices in psychiatric rehabilitation services in Israel: A worthy and feasible challenge. Isr J Psychiatry Relat Sci 2007;44:47-53.

6. Goldman HH, Ganju V, Drake RE. Policy implications for implementing evidence-based practices. Psychiatr Serv 2001;52:1591- 1597.

7. NIMH. Bridging science and service: A report by the National Advisory Mental Health Council’s Clinical Treatment and Services Research Workgroup, 2005.

8. Roe D, Gross R, Kravetz S, Klienman-Baloush V, Rudnick A. Assessing Psychiatric Rehabilitation Service (PRS) Outcomes in Israel: Conceptual, professional, and social issues. Isr J Psychiatry Relat Sci 2009;47:24-31.

9. Callaly T. Routine outcome measurement by mental health-care providers: Comment. Lancet 2003;361:1137.

10. Lasalvia A, Ruggeri M. Assessing the outcome of community-based psychiatric care: Building a feedback loop from “real world” health services research into clinical practice. Acta Psychiatr Scand 2007;116:6-15.

11. Grinshpoon A, Abramowitz MZ, Lerner Y, Zilber N. Re-hospitalization of first-in-life admitted schizophrenic patients before and after rehabilitation legislation: A comparison of two national cohorts. Soc Psychiatr Epidemiol 2007;42:355.

12. Shern DL, Wilson NZ, Cohen AS, Patrick DC, Foster M, Bartsch DA, et al. Client outcomes II: Longitudinal client data from the Colorado Treatment Outcome Study. Milbank Q 1994;72:123–148.

13. Cohen J. Statistical power analysis for the behavioral sciences. New Jersey: Lawrence Erlbaum, 1988.

14. Farkas M, Anthony WA. Psychiatric rehabilitation interventions: A review. Int Rev Psychiatry 2010; 22:114-129.

15. Corrigan PW. Principles and practices of psychiatric rehabilitation: An empirical approach. New York, N.Y.: Guilford, 2008.

16. Drake RE, Merrens MR, Lynde DW. Evidence-based practice in mental health: A textbook. New York: Norton, 2005.

17. Drake RE, Goldman HH, Leff HS, Lehman AF, Dixon L, Mueser KT, Torrey WC. Implementing evidence-based practices in routine mental health service settings. Psychiatr Serv 2001;52:179-182.

18. Mueser KT, Torrey WC, Lynde D, Singer P, Drake RE. Implementing evidence-based practices for people with severe mental illness. Behav Modif 2003; 27:387-411.

Isr J Psychiatry Relat Sci - Vol 47 - No.3 (2010)

Uri Aviram

Promises and Pitfalls on the Road to a Mental Health Reform in Israel* Uri Aviram, PhD The Paul Baerwald School of Social Work and Social Welfare, The Hebrew University of Jerusalem, Jerusalem, and Sapir College, D.N. Hof Ashkelon, Israel

Introduction

ABSTRACT This study assessed efforts to reform the mental health (MH) service system in Israel, moving the locus of treatment and care from a mental hospital system to the community. It focuses on changes which occurred in MH policy and services especially during the last decade, evaluating trends and issues regarding legislation, clients, budgets and personnel of the system. Findings indicate a drastic decline in the number of psychiatric beds, length of stays in inpatient services, a reduction in the number of MH personnel, and a dramatic increase in rehabilitation services in the community. However, no government hospital was closed and budgets for hospitals actually increased, while MH community clinics’ budget was reduced. The efforts to transfer responsibility for MH services to the health care provider organizations have not been successful yet and the reform has not been completed, endangering the progress achieved so far. Promises and perils on the road towards a successful reform are discussed. It seems that the stigma and the social exclusion of persons suffering from mental disorders, as well as the salience of the issue of MH in relation to other problems the Israeli society has to deal with, have contributed to the failure of efforts to reform the MH service system.

* I would like to thank many who assisted me in obtaining the data for this study and who commented on my assessment, particularly from the Ministry of Health. Though I greatly appreciate the input of all the people who helped me along the way, I take full responsibility for the content of this article. Also it doesn’t necessarily represent the formal positions of the organization I am employed by.

Address for Correspondence:

On July 18, 2007, the Knesset (Israel’s legislature) approved a bill to reform the mental health (MH) service system (1) and moved it to committee for debate and consideration of amendments toward the final vote. However, toward the end of 2008, as new elections approached, it became apparent that the bill would not reach the stage of final approval.

Thus, another attempt to reform the MH service system in Israel failed. The proponents of the reform still hope that the newly-elected Knesset will resume the process and approve the long-awaited MH reform. For almost 40 years, Israel has been trying to reform its MH service system.

The objective of the planned reform has been to transfer the locus of treatment and care from a mental hospital system to the community. During these years, four major efforts to achieve a radical reform failed (2-4).

In spite of the fact that persons who suffer from a mental disability represent a large population group, the treatment, rehabilitation and care for this group has not received proper public attention within Israeli society.

It seems that the social marginality of this group, the stigma from which its members suffer, their exclusion from mainstream society, and the salience of this issue in relation to other problems Israeli society has to deal with explains the low level of public attention to the matter, and has contributed to the failure of efforts to reform the service system for them (2).

The last two efforts to enact a MH reform law were related to the National Health Insurance Act (1994) (5). The original intent of the legislature to transfer the responsibility for MH services to the health care provider organizations and integrate MH services with general health care services has been postponed for about 13 years since its due date for implementation set by the legislature (2, 6, 7).

In spite of the failure of a radical reform, some incre-

Uri Aviram, PhD, POB 749, Karkur 37106, Israel

msaviram@mscc.huji.ac.il

171

Promises and(2010) Pitfalls on the Road to a Mental Health Reform in Israel Isr J Psychiatry Relat Sci - Vol 47 - No.3

mental changes in the MH service system, especially during the last decade, have occurred. These might have created facilitating conditions for a reform. However, there are many pitfalls along the road toward reforming the system.

This paper assesses these changes in the MH service system, and discusses their meaning in relation to the policy objectives to transfer the focal point to the community. Following background information on the scope of the problem of mental disabilities in Israel and a short review of the previous efforts at reform, the changes in the MH service system over the last decade are assessed.

Analysis of the data is based on examination of the critical elements of the MH service system, namely, clients, financial resources and personnel, and the principles governing their allocation and movement within the system. In addition, legislation related to the treatment and care of persons suffering from a mental disability during this period is assessed.

The discussion of the changes is focused on the target population, budget allocations, services rendered, personnel training and availability, and research and evaluation. Although the target population of MH services encompasses a wide range of suffering from a variety of conditions at various levels of disability, this paper focuses mainly on persons with severe and persistent mental illnesses. While this group seems to be the most disabled and of high priority for MH services, it does not mean that those with less severe problems do not need services or that the attempted reform excludes them or that they could not benefit from it.

Continuing problems and current issues related to factors that hinder the reform and those that might facilitate it are presented. An attempt to understand the problems of reforming the MH service system within the prevailing socio-political environment is made.

Considering the environmental conditions and the target population for whom policy changes are attempted, efforts at a radical reform vs. incremental changes are discussed. Finally, tentative conclusions with regard to the critical conditions necessary for implementing these kinds of reforms in MH as well as remarks on the main factors in overall policy changes are made.

Mental Disability in Israel: The Scope of the Problem About one-third of the total number of those receiving disability pensions from the National Insurance Institute 172

(NII) are persons suffering from mental impairments.

This is the largest group of all those receiving disability pensions from the NII. in December 2008, their total number was 62,686 (8).

Research in the mid-1990s (9) estimated that 1.2% of the adult population (18-64) suffered from serious mental disorders. Based on the demographic changes since 1996 (10), the number of persons with severe and persistent mental illnesses at the end of 2007 was about 47,000. Due to the changing patterns of MH treatment and care, most of those suffering from severe and persistent mental disorders are in the community (11-13).

We found that about 90% of this group was at any point in time during the year in the community, although they could have been hospitalized for sometime during the year in a mental hospital (9).

Since both estimates were based on reported cases only, one can conclude that they are rather conservative.

In addition, these figures are for the population group of 18-64. Although it is hard to define the criteria for persistent mental illness for persons less than 18 years of age, there is no doubt that among this group there are some severely mentally ill persons, and among persons 65 years and older there are those with severe mental disorders.

In conclusion, based on a most conservative estimate, the number of persons suffering from severe and persistent mental illness in the total population for 2005 reached about 85,000 persons (1.2% of the population) (14).

The scope of mental disorders in society is much larger than the 1.2% of those suffering from severe mental illness. The World Health Organization (WHO) estimated that 10% of the general population suffers at any given time from mental illness and emotional difficulties and that 25%-35% of the population will need MH services sometime during their lifetime (13).

The disability of persons suffering from mental illnesses is associated also with poverty, stigma and social exclusion (13, 15, 16). Mental illnesses were rated by the WHO on the Global Burden of Disease Scale similar to cardiovascular heart diseases and cancers, and they are among the 10 top causes for disability in the world (13, 17). These people use fewer health care services compared to the rest of the population, their morbidity rates are higher than people not suffering from mental disorders and their life expectancy is about 10-15 years shorter than those who are well (15,18,19). Thus, based on health and social measures, this is a large group of people who suffer from severe disability, represent burden to their families, need a lot of health and

Uri Aviram

social services, and require sizable personal and public resources.

In considering the burden of mental illness, one cannot ignore the emotional, social and economical burden on the family, the community and society in general.

Studies conducted abroad inform us not only of the distress to the families who care for a mentally ill member, but also the ramification on their economic condition and even their physical health (20, 21).

Mental illness also has economic consequences. A recent study conducted in the United States reported the tremendous effect on the annual earning loss of persons suffering from serious mental disorders (22).

Proportionately to the size of the population in Israel and adjusted to the differences of the GDP, according to a rough estimate, the figure for Israel would be approximately US$2.5 billion in lost annual earnings. In addition to the economic effect due to the loss of earnings of persons suffering from mental disorders and their families, public expenditure for treatment and care for those persons composes a sizable portion of the GDP of this country (2, 23, 24).

How many people are affected directly by the severe and persistent mental disorders of their family members? No study has been done in Israel on this subject.

However, if one uses a conservative estimate, taking into account an average nucleus family (parents and children) of 3.7 persons (25), and given the figures of the NII of 60,000 persons, age 18-64, suffering from severe mental disorders in the country, the number of affected family members would be about 225,000, about the same number as the residents of a medium size city, and about 5.5% of the total adult population (18-64) of the country. If we were to add to this figure the number of people suffering from chronic and severe mental illness under age 18 and above 65, this number would increase significantly (14).

Previous Efforts to Reform the Mental Health Service System Since the early 1970s, Israel’s official policy has been to introduce a fundamental reform of its MH services.

The attempts to reform corresponded with the general trends of change in MH services occurring in the western world (11, 12). The ideas behind this attempted policy change were based on advanced principles of mainstreaming psychiatric care by integrating MH services in the general community-based health care sys-

tems (26). Community-based MH services, as opposed to a system based on psychiatric hospitals, have been considered clinically better, more humane, as well as more economically viable (27, 28).

Assessment of the MH system in Israel between 1970 and 1990 revealed weak community services, dominance of mental hospitals and strong medicalization approaches towards the treatment and care of persons suffering from mental illness (2, 29). In view of these, as well as the traditional orientation of the Israeli health system toward hospitals and acute care, the objectives of the reforms represented a radical shift in policy.

From the early 1970s to the mid 1990s, there have been three major attempts – mostly initiated by the government – at radical MH reform. The recent fourth attempt has failed as well.

The first attempt at reform began in 1972 with the reorganization plan of MH services (The Tramer Plan) (3, 30). This plan was based on the American model of community MH centers’ program anchored in law in the United States nine years earlier (31). The Tramer Plan, which was the flagship of MH services and the Ministry of Health for a decade, brought about substantial financial assistance from a Jewish philanthropic organization based in the United States; however, it did not lead to the expected radical MH reform, and in effect didn’t materialize (3, 28, 32).

The second attempt was an agreement between the Ministry of Health and Kupat Holim Clalit (Clalit), the health care organization of the labor union (which provided health services to about 80% of the population at the time), signed in April 1977 (the Menczel-Doron agreement). The purpose was to implement the previously stalled Reorganization Plan of MH services. The Menczel-Doron agreement stated that MH services would be provided to all residents by region, at no cost, and that the government would finance the program (33). However, aside from minor changes in the delivery of MH services in the country, basically, the agreement was not implemented. Furthermore, following the agreement Clalit canceled its insurance coverage and thus its responsibility for the provision of MH services to its insured members, putting it on the government.

As it turned out, this step had grave consequences which burden the attempts to improve the MH system to this day (2, 4, 34).

The third attempt was connected to the National Health Insurance Act (NHI) (5) and to the reform plans of MH services which followed. Those who planned the 173

Promises and Pitfalls on the Road to a Mental Health Reform in Israel

reform (4, 35) believed that the reform in insurance, meaning moving responsibility of MH services to the health care providers, would assist a structural reform in MH services, reducing the use of inpatient services and would bring about the development of a system of community MH services (2, 4, 36).

In all three attempts mentioned above, the Ministry of Health and the Clalit health care provider were the major stakeholders, and were directly involved in the negotiations. However, analysis reveals that there were other stakeholders, some even were parts of the major ones, which affected the outcome. Among those other stakeholders, the Ministry of Finance was crucial. Indifference or lack of support by the Ministry of Finance was a major factor for the failure of all three attempts (2-4). During the recent attempt, organizations of family members and users as well as psychologists and social workers became especially involved in the process.

Conflicts between the parties revolved around issues of budget, control and professional and organizational autonomy. The proponents of the reforms failed to mobilize a strong coalition, and the leadership of the Ministry of Health lacked a strong commitment to the reforms. Failure to implement the reforms was also partly due to the structure of services, their historical and organizational background, and the traditional orientation that views curative medicine and hospitals as the hub of the system (2, 4).

Since processes and outcomes of previous efforts to reform the MH system have been assessed elsewhere (2), it is only important to point out that the case studies of the previous efforts illuminated the circumstantial and contextual factors that perhaps had not given the reform a chance to begin with. These include: social marginality, social exclusion and the stigma of the population of persons suffering from mental disorders. In addition, the prominence, or rather the lack of it, of the issue, and the minor importance the public has attributed to the issue within the framework of other problems and circumstances with which it has dealt during this time have also contributed to failure of the reform.

Perhaps, the environmental conditions during the period studied were not ripe for a change. Throughout the time the reform was attempted, Israeli society was in a constant situation of existential concern, and did not and perhaps could not pay attention or have the energy or the will to take care of problems regarding weak and excluded populations, such as people with mental illness.

174

Furthermore, during the periods in which reforms were attempted, major changes and traumatic events occurred. About a year and a half after the Ministry of Health announced the reorganization plan, the Yom Kippur War broke out. The political turnabout of 1977 occurred close to the Menczel-Doron agreement, and the assassination of Prime Minister Rabin occurred during the mid-90â&#x20AC;&#x2122;s attempt at reform.

Finally, the recent attempt to reform the MH service system during the period of 2006-2009 (37) has been faced with major contextual issues that might explain its failure. These are the political upheaval during the years 2007-2008, the global financial crisis of SeptemberOctober 2008, and finally the latest Israeli war against the Hamas in Gaza as the year 2008 was ending. Will the Israeli society have the energy and determination to undertake a major social change while it has to cope with major pressing social, economic and political issues?

Recent Changes in Mental Health Policy and Services Following the failure of the third attempt at reforming the MH system in 1996 (4), Israel launched partial (or incremental) reforms that may become important parts of achieving the objective of moving the locus of treatment and care for MH services to the community.

Included is the legislation of the Rehabilitation of the Mentally Disabled in the Community Law (RMD) and the establishment of rehabilitation services in the community as well as the plan for reducing the number of psychiatric beds in the country. These changes, later called the Rehabilitation Reform and the Structural Reform, were intentional policy changes, done by the government alone without involvement of the healthcare providers. Apparently, they are turning out to be an important part of a comprehensive change of the MH system in the country, yet to be completed (10, 38-41).

Inpatient services. From 1996 to 2006, the number of psychiatric beds in Israel declined by 50%, from 6,599 to 3,453. The rates went down from 1.17 per 1,000 of the general population in 1996 to 0.49 in 2006 (a 60% decline). From 1996 to 2007, the number of hospitalization days in psychiatric hospitals declined by 47%, from 2,289,984 days in 1996 to 1,213,264 in 2007 (Table 2) (39, 42). Net bed occupancy steadily declined from 93% in 1997 to 72% in 2005 (and rose to 84% in 2006 and 2007).

Persons discharged from inpatient services spent longer periods in the community before readmission. Also, the

Uri Aviram

proportions of long stay patients (one year or longer) among the total inpatient population show a constant decline during the decade starting in 1996 (68% to 44%) (37, 40). Between the years 1995 and 2005 the average length of stay of persons discharged from inpatient care declined by one half and the average length of stay for all inpatients declined by 60% (Table 2).

Data on readmissions reveal a different trend. Whereas the rates of first admissions have not changed during the decade from 1996 to 2006 (the increase of 23% in the numbers reflects the growth in the population), the numbers and rates of readmissions increased (43% and 16% respectively) (39, 42).

During this period, four out of eight private mental hospitals were closed (39); however, none of the government hospitals were closed. Several former private psychiatric hospitals actually changed their function and title, becoming community residences (similar to nursing homes). These residences are designated for severely mentally disabled persons who are considered a separate category and have not become part of the clientele of the rehabilitation services. As seen in Table 1, reduction of psychiatric beds was in all types of mental institutions. However, proportionately, private mental hospitals show the greatest decline in beds.

Table 1. Psychiatric Beds by Ownership Ownership

1996

%

2006

%

Percentage of Change 1996-2006

Private

2419

36.7

228

6.6

-91%

Governmental

3660

55.5

2804

81.2

-23%

Clalit Healthcare Provider

369

2.3

306

8.9

-17%

Public

151

2.3

115

3.3

-24%

Total

6599

100

3453

100

-48%

Source: Ministry of Health, Mental, Health Services, Dept. of Information and Evaluation (39, 42)

Rehabilitation services in the community. During the same period there has been a substantial improvement in rehabilitation services for people with mental disabilities (41, 43). Based on the RMD 2000 law, the newly-established rehabilitation system includes protected and supported housing, sheltered and supported employment, completion of education, social clubs and more (40, 41, 43). By the end of 2007, it provided services for about 14,000 persons with mental disabilities, in comparison with 4,350 in 1998 (39, 44). The number

Table 2. Inpatient Days in Psychiatric Hospitals and Psychiatric Departments in General Hospitals, 1995-2007 (1) Total average length of stay (inpatient care)

Average length of stay of persons discharged (inpatient care)

Number of days(2)

Year

260

216

2,255,591

1995

151

107

2,289,948

1996

339

300

2,211,756

1997

180

148

2,101,190

1998

181

155

2,011,289

1999

280

260

1,842,867

2000

130

117

1,722,537

2001

124

108

1,642,462

2002

120

110

1,578,505

2003

116

106

1,489,716

2004

100

90

1,407,847

2005

182

176.

1,315,975

2006

90

84.

1,213,264

2007

Source: Ministry of Health, Mental Health Services, Department of information and Evaluation (39, 42) (2) Total net days from admission to discharge, not including days the patient did not sleep in the hospital (1)

of people with mental disabilities living in supported living in the community was more than doubled during a period of five years after the enactment of the Law. It increased from about 2,150 in the end of the year 2000 to 7284 at the end of 2007 (42, Y. Shershevsky, personal communication, April 1, 2007; August 5, 2008).

Legal changes. Although it would be hard to measure the exact effect of legislation and court rulings on the changes that have been taking place, it would be safe to conclude they had an impact. In addition to the RMD (40), other legal changes include: the revisions of the MH law (45), the Law for Equal Rights for People with Disability (46), Basic Law: Human Dignity and Liberty (47), and numerous court rulings regarding people with mental illnesses.

These laws have been affecting the flow of persons in and out of inpatient facilities; their treatment and care; as well as their quality of life in the community.

Changes in budgetary allocations. The changes in the MH service system are also reflected in the budget allocations during the last decade (Table 3). While in 1999, the year an experimental program in community rehabilitation began, the percentage of rehabilitation in the government MH budget was a tiny 3.8%, in 2007 it had reached about one-quarter of the total budget.

Based on constant prices (adjusted to the 2007 health price index), the budget for inpatients constitutes about 175

Promises and Pitfalls on the Road to a Mental Health Reform in Israel

20% less of the general MH budget than it did in 1999 (though the total amount [in constant prices] slightly increased). In contrast, the budget for rehabilitation services increased eightfold. In the budget year of 2008 the allocation for rehabilitation services was NIS386 million, an increase of about 20% from the one for the 2006 budget (48) In spite of the substantial decline in the number of psychiatric beds, in constant values, the budget for inpatient services remained approximately the same during the decade (48). Also, the increased number of previously long-term hospital patients who are now in the community was not reflected in an increased budget for community ambulatory services. As shown in Table 4, during the 12 years that followed the implementation of the NHI (5) there has been a 40% decline (in constant prices) in the budget for these services. This decline was attributed to the governmentâ&#x20AC;&#x2122;s expectation the reform would be completed, thus the responsibility for MH services would be transferred to the health care providing organizations. The Ministry of Finance did budget NIS50 million for developing ambulatory services during this transition period, while a reform is still being attempted. However, so far only 20% of the money has been used due to conditions imposed by the Ministry of Finance (D. Fast & Y. Polakevits, personal communication, January 1, 2009).

A court gave a ruling (49) for an additional budget for MH community clinics to be provided by the health care providers; though the sum is debated between the government (NIS120 million) and the health care providers (NIS40 million) (D. Fast & Y. Polakevits, personal communication, January 1, 2009).

In addition to the special allocation for rehabilitation services in the MH Services budget the Ministry of Housing has been providing housing subsidies for protected living arrangements for persons with a mental disability who meet the criteria for this type of subsidy.

Since there is no available data on the total amount of housing subsidies for persons in the protected housing program of the rehabilitation services of the Ministry of Health, one can only make an estimate. At the end of 2007, about 6,300 persons were receiving a housing subsidy of NIS650 per month, bringing the total amount of subsidies from the Ministry of Housing for persons in housing rehabilitation programs close to NIS50 million.

Changes in the workforce. The changes during this decade are reflected also in the number of positions in 176

Table 3. Inpatient and Rehabilitation Budgets,(1) Government Mental Health Services, 1999-2007 (In thousands of NIS) In Current Prices 1999

2001

2002

2007

Inpatients

794,750

942,508

950,654

949,081

Rehabilitation

39,739

95,815

213,547

375,754

Other expenses

185,031

235,839

197,497

291,784

Total(3)

1,043,129

1,274,162

1,361,698

1,616,619

(2)

In constant prices based on prices of the health price index of 2007 1999

%

2007

%

Inpatients

921,472

78.4

949,081

58.7

Rehabilitation

44,746

3.8

375,754

23.2

Other expenses

208,345

17.7

291,784

18.0

Total

1,174,563

100

1,616,619

100

(1) All budgets in this paper are based on the data of the final budget.

The budget actually used may differ from the budget originally allotted.

(2) Other expenses include: drug-rehabilitation centers, clinics in the community and autism care (and in 2007 also acquisitions of hospitalization substitutes).

(3) It is important to note that this analysis is based only on the budget given by the Ministry of Health for MH services. There are additional funds for services in the community, such as from NGOs, welfare services and health care providing organizations, mostly the Clalit healthcare provider. However, most of the budget for MH services comes from the Ministry of Health.

Source: Israel State Budget, 1999-2007 (48)

Table 4. Government Mental Health Ambulatory Clinics, 1995-2007 (1)

1995

2002

2007

% of change 1995 between 2007

Clinics affiliated with hospitals

84,776

88,570

41,535

-51%

Clinics in the community

67,979

47,049

49,557

-27%

Total (2)

152,755

135,619

91,092

-40%

In thousands of NIS,constant prices based on prices of the health index of 2007.

(2) In addition, there are external providers of ambulatory services such as the Association for Public Health Serices and Clalit Healthcare Provider.

Source: State Budget years 1995, 2002, 2007 (46).

(1)

MH services within the Ministry of Health. From 3,702 positions in 1999, to a peak of 3,724 in 2003, the number declined to 3,348 in 2008 (Table 5) (23, 39). Ministry of Health officials claimed that during this period a few positions (financed by government) were added by NGOs for the provision of community MH services (Y. Polakevits, personal communication, January 1, 2009).

Uri Aviram

This decline is even more alarming when one examines the changes in the number of positions in the Ministry of Health and compares them to the changes in the number of positions in MH services. While the total number of positions in the Ministry of Health increased during the decade from 1995 to 2005 by about 15% (from 21,795 to 26,867), MH services lost 345 positions, or 10% of its workforce, in a period of eight years (39, 48). Since so far, according to the National Health Insurance Act (5), the government has continued to be responsible for the delivery of MH services, one might wonder how to explain this decline in the number of MH government positions. Perhaps it would be safe to conclude that the reason for this change was a result of the structural and rehabilitation reforms or the expected insurance reform.

Discussion No doubt, a significant change has occurred during the last decade in the MH service system of the country. It seems that policy decisions reflected in the structural reform and rehabilitation have affected this change.

However, since the insurance reform has been stumbling for the last 13 years, the other achievements are endangered, and the MH service system may experience a setback. Research has shown that a lack of adequate community MH services may result in an increase of hospitalizations (50). No one knows whether the new government and the newly-elected Knesset of 2009 will follow up on the last government decision to reform the MH system, transferring responsibility for MH services to the health care providers.

The following will discuss the hindrances and the promises of these changes and suggest what may facilitate the long-awaited objective to create strong and responsive community MH services. Some lessons which could be learned from the Israeli experience will be illuminated.

The two major changes that have been underway during the last decade, namely the substantial reduction in psychiatric beds and the establishment of a community rehabilitation system, may serve as important facilitating factors for the 13-year-long attempted MH insurance reform.

Although most indicators, such as the decline in the number and rates of inpatient services, length of stay, number of hospitalization days, longer community stays between hospitalizations, and reduction in the pro-

portion of long-stay patients among mental hospitals’ population, show that inpatient services move in the direction of government policy, i.e., becoming mainly a service for acute patients, there are still some disturbing factors. According to the latest published statistics, in 2007, long-stay patients in mental hospitals were more than one quarter of the total population in the hospitals (27%) (39). In an acute care system, this proportion of long-term patients seems too high.

Furthermore, in spite of substantial reduction in the number of psychiatric beds, no government hospital has been closed during this period. Admittedly, during the last decade, the government was able to close several private mental hospitals. However, its effort to close a major government mental hospital in the central region failed (51, 52). Countries which reformed their MH service system reduced the number of their MH institutions substantially, allowing money saved on inpatient services to “follow the patients into the community” (11, 53, 54). For example, in England and Wales, from 130 mental hospitals which existed in 1975, only 15 remained in the year 2000 (55). Furthermore, in a system emphasizing community care, one would have expected an increase in the services of day hospitals. Data do not show this (39). Also, it seems that if community MH clinics and rehabilitation services would have sufficiently increased and would function better, the rates of readmissions could be reduced. Thus, in spite of the progress towards reforming the system, there is still much to be desired.

While around 90-95% of people with chronic mental illness are in the community at any given point in time (9, 39), only about 30% of the government MH service budget is directed towards community services, including ambulatory and rehabilitation services (39, 48). This distribution is different than the one in general health services, in which about half of the systems’ expenses is directed towards community services (23, 24).

Also, in spite of the substantial decline in the number and rates of inpatients (Table 1), in constant prices, there was no decline (and even a slight increase) in the budget for inpatient services during the same period (Table 3).

In addition, the budget for government hospitals actually increased during the years 1997-2006 (Figure 1), while during the same period there was an actual decline in ambulatory service budgeting (Table 4).

Although the decline in the number of psychiatric beds in government mental hospitals was much smaller than in private ones (23% and 91% respec177

Promises and Pitfalls on the Road to a Mental Health Reform in Israel

tively) (Table 1), in no way was it insignificant. Thus, the increase of about 25% in the budget allocations for government mental hospitals (Figure 1) is noticeable and perhaps even puzzling. The explanation provided by the Ministry of Health was that government hospitals had been under-budgeted and needed additional funds in order to stabilize their budget (Department of Budgeting, Ministry of Health, personal communication, March 28, 2007). However, the timing of this increase, which happen to be during the time period the government was trying to achieve the MH reform and transfer responsibility for MH services to the health care provider organizations, makes one wonder whether this was not aimed, at least in part, at neutralizing the opposition of the strong lobby of the government psychiatric hospitals and of the Israel Medical Association to the planned reform (4).

Fig 1. Government Mental Hospitals’ and Rahabilitation Services’ Budgets, 1995-2007 800,000 700,000

Government Psychiatric Hospital Rehabilitation

clinics, and the prolonged period of postponed legislation of the reform and delayed implementation of it, have had an adverse effect on MH services in the community. Furthermore, the uncertainty of whether the planned reform will be implemented at all has caused labor unrest in the clinics and affected the ambulatory services even further.

A major concern in the debate regarding the pros and cons of the planned reform was the lack of adequate community infrastructure of clinics and other community MH services necessary for a successful implementation of the MH reform. One would have expected that during the long period the reform has been debated, government would have invested in developing and strengthening community facilities. However, assessing the distribution of development budgets during the last decade or so shows almost no funds allotted for community service development. As shown in Table 5, almost all budgets went to government mental hospitals. Furthermore, it seems that it would be difficult to decide to close newly-renovated institutions, even if the MH reform calls for it.

Table 5. Government Development Budgets for Mental Health Services, 1995-2008*

600,000 500,000

Hospitals

223,250

97%

400,000

Clinics in the community

6,750

3%

300,000

Total

6,750

100%

* In thousands of NIS, in current prices. Does not include foundations such as roads, sewage etc., only building.

Source: Department of development and building, Ministry of Health

200,000 100,000 1995

2001

2002

2007

* In thousands of NIS,constant prices based on the 2007 health index Source: State Budget 1995-2007 (37)

Another somewhat disturbing fact revealed in the assessment of the data was the noticeable decline in the budget for ambulatory services (Table 4) and the neglect of developing community infrastructure for MH services (Table 5). These are contrary to trends in other countries, emphasizing the humane and economic costs of depressions and anxiety reactions and as a result investing in community MH services for what has been termed as “soft psychiatry.” Recently, the U.K. government allotted £180 million in order to enhance such services (56, 57).

The neglect of maintaining at least the status quo in the level of budget allocations for MH community 178

While in other Western countries about 10% of the health budget is allotted for MH services (51), in Israel only 5% is. Although there is no study on this matter, it would be safe to conclude that this situation causes many people with mental disabilities to pay for services privately, or to give up on them because of a lack of resources.

Whereas the budget allocation for general health services has been adjusted for increase based on demographic changes and has an annual addition for new technologies, MH services, which according to the National Health Insurance Law remained in government responsibility, do not have such arrangements. Several years ago, the then Minister of Health, N. Dahan, transferred about NIS20 million from the new technology adjustments item for new interventions in rehabilitation services. Such additions have been a matter for continu-

Uri Aviram

ous negotiation between the MH Services, the Ministry of Health and the Ministry of Finance, and under a threat of budget cutbacks during the year.

There is no doubt that the enactment of the RMD law of 2000 was a great achievement. This law entitles persons who meet the criteria of mental impairments of 40% (as defined by the NII), to a “basket” (package) of rehabilitation services, determined by professional experts (40). However, this law and the rehabilitation system that has been established are being threatened.

The government proposal for a MH reform includes items to fundamentally change the Rehabilitation Law (1, Sec. 12). It is being proposed that rehabilitation services would be contingent on budgetary allotment and administrative decision (1). Legally, the entitlement principle would not be changed. However, not providing services when needed would create a waiting list, impose burden on persons, families and communities, and may in fact cause many mentally disabled persons to be neglected and cause their condition to deteriorate. Thus, in fact, this proposed change eliminates the entitlement for the service. Comparably, it is like denying an Old Age NII’s pension (to an elderly person who is entitled to it by law), arguing that no money was left in the budget for this purpose.

Establishment and early development of the rehabilitation services was based on a five year plan for gradual growth of the service. However, increase to meet the growing needs of the population not yet included in the program has not been assured, nor is the continuation of the present budget certain. Whereas, during the first five years (2001-2005) there was a budget agreement between the Ministry of Finance and the Ministry of Health for an annual increase of the budget for the rehabilitation services (38, 58), in recent years, budget allocation is a matter for negotiation. This does not allow proper multi-year planning, an essential requirement for a developing system.

In the recent MH reform plans, debated in the Knesset during 2007-2008, a planned increase of 1,200 persons each year for the next seven years was mentioned contingent to the reform being approved (59).

The ground for this number of assumed increase of services has been unclear. The only possible explanation for the origin of this figure is that it was based on the average annual increase in past years and on what the bureaucrats had decided when the program was launched. One knows that the number of recipients is not determined only by demand. It can be controlled by

other factors such as availability of the service or of the workforce responsible for implementing the program.

No research was done estimating the potential annual increase of persons in need of and who qualify for rehabilitation services. Nor do we know on what basis the government determined that the steady state of the rehabilitation services would be reached in seven years with an addition of 8,400 persons to the current figure of 14,000 receiving rehabilitation services in the community (58). Since the estimate of those who are entitled to the service is about 50,000-60,000 persons, it could very well be that the figure mentioned by the government is well below the actual need.

In planning adequate services for the future, one must take into account demographic changes. Based on the CBS’s estimates of 1.4% annual growth of the general population, the population in Israel in the year 2020 would be 8.6 million persons (an increase of 20% from 2007) (60). Assuming the same rate of persons suffering from severe and persistent mental disabilities, the estimated number of those eligible for rehabilitation services would be 63,000-75,000 persons. One might wonder whether there have been any plans for this estimated additional demand for rehabilitation services. It is just a decade away.

The past experience of an annual increase of recipients may be a reflection of several factors such as the insufficient number of personnel administering the service. This could account for the high proportion (25%) of those who were approved to receive a package of rehabilitation services but did not in the end use the service (39; Y. Shershevsky & L. Botzer, personal communication, August 5, 2008). Regardless of what causes this situation, the fact is that the current number of annual additions for rehabilitation services is several hundreds below the actual number of persons approved for the service.

There has been insufficient monitoring and evaluation by the Ministry of Health of the different rehabilitation services, examining whether these privatized organizations observe the standards set by the Regulator and their contracts. A lack of appropriate regulation may create a situation by which instead of deinstitutionalization and community rehabilitation, trans-institutionalization may take place, resulting in creation of sub-standard “mini-hospitals” in the community (61, 62).

Furthermore, no outcome studies on MH services have been conducted, nor have criteria for such studies 179

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been developed. The system lacks comprehensive data that would allow it to follow up on such matters as fidelity of programs, quality of life of users of the system and their mobility within the system and progress in their conditions. Admittedly, parts of the system are emergent, but it is about time these issues were addressed and acted upon (63).

There has been another serious issue in relation to budgets and services for the target population of persons with a mental disability. Once the special laws and policies are established for treatment, care and rehabilitation in the community, services previously provided by different central and local governments and civil authorities were cut, and budgets were moved by the agencies for other pressing needs, assuming the special laws must cover the needs of its target population. An example of such a trend is the decision of the Ministry of Labor and Social Affairs, announcing that persons with psychiatric disabilities are outside of its jurisdiction (64). In order to prevent any misunderstanding, the Ministry announced that it would not take on any duties within the framework of the (then planned) MH reform (65).

In view of the current effort to legislate and implement the MH reform, we must be aware and concerned that resources might be cut or removed for other purposes. As already mentioned, the proposal calls for a drastic amendment of the rehabilitation law that, no doubt, will result in reduction of services. Since the three major components of the MH service system are interdependent, this amendment would affect the inpatient and ambulatory services. Similarly, once the MH reform passes and services are transferred to the health care providers, they will compete for resources with other branches of medicine. In such competition between psychiatry and other medical specialties, such as cardiology, oncology and gynecology, it is clear who has the upper hand. Furthermore, considering the low social status of the severely mentally ill, and their social marginality, the health care provider organization might be inclined to save money, providing services at the lowest possible level. If this happens, it would have adverse ramifications for all components of MH services and quality of services would be negatively affected. I assume the Ministry of Health is aware of these problems, but is the Regulator strong enough to perform its duty vis-Ă vis the health care providing agencies?

Analysis of previous efforts at MH reforms indicated that one of the major factors for failure of these efforts 180

was the non-involvement of the Ministry of Finance (2, 4). In the recent effort, the Ministry has supported the reform. However, it seems that although improving the services might be one of the objectives, decreasing government expenditures and reducing the number of government positions in the work force in MH services might have been the Ministry of Financeâ&#x20AC;&#x2122;s main objective. Policy studies show that saving the government money remains a prime driving force in such reforms throughout the world (12, 66, 67). Indeed, the Ministry of Finance conditioned its support and budgeting of the rehabilitation services on a substantial reduction in the number of psychiatric beds, decline in the average length of stay in mental hospitals and reduction of number of employees in mental institutions (41, 58).

Based on an average cost of hospitalization per day, using 2007 constant prices, the saving for the government during the years 1995-2007 could have amounted to somewhere around 900 million NIS. For the sake of illustration, the current average annual budget per person in rehabilitation services is about NIS27,000. This means the budget saved from hospitalizations could have given solutions for about another 33,000 people in rehabilitation services. Admittedly, not all the potential savings were realized or could have been realized due to the fact that no government mental hospitals were actually closed during this period, but it definitely looks as if substantial savings were made.

The above might be a reflection of an attitude of policy makers and, in fact, a practice that endangers the whole MH reform. Transferring the locus of MH services from a hospital-based system to a community-centered one is not just a matter of reducing the number of psychiatric beds, or shortening the length of stay of patients in mental hospitals or of saving money for the government. As important as these matters are, the reform means much more. It is a fundamental change in the culture and practice of the MH service delivery system, as well as a fundamental change in the health and welfare systems and the attitudes of the society at large toward persons who suffer from mental disabilities. Integrating MH services into the general health care services entails a major change in medical practice altogether. It requires retraining the family doctor and changing the ways in which medical service organizations operate. Furthermore, caring for people who suffer from a mental disability in the community is much more than transferring mentally ill persons from hospitals to protected living arrangements in the community. It is very easy for a system to slide

Uri Aviram

into a process of moving people from the back-wards of hospitals to the back-alleys of the community (61, 68).

In the business world, in order to develop a new product, one needs first to invest; hoping to reap the fruits of the investment later. In other countries, as governments were attempting to reform MH services, they did indeed invest, providing the system with extra funds (â&#x20AC;&#x153;a hump,â&#x20AC;? using an Australian expression) in order to facilitate the change (54, 55). As impressive as some of the trends in Israel during the last decade are, analysis shows reluctance on the part of government to invest in the system what is really needed in order to give the reform a good chance of succeeding.

Related to the lack of sufficient support on the part of policy makers and the subsequent shortage in funds, two additional issues loom clearly. There is a shortage of trained personnel for the new tasks in the reformed system, a need for training programs for professionals, caretakers and users, and a pressing need for research of process and outcome of new services such as CBT, family supports, case management, different components of rehabilitation services, as well as new medications and therapies in inpatient services. Although there have been some efforts in these directions, they are far from what is needed.

Concluding Remarks Israel stands now at a crossroad. Soon we will know whether the new government will pick up where the outgoing government left off, and resume the efforts to reform the MH system. The Ministry of Finance, a key stakeholder, has been threatening that it will withdraw the proposal or block its implementation if some of the items in the proposed reform, such as the clause changing the rehabilitation law, are amended. Furthermore, even if the reform is legislated there are quite a few hindrances on the road to its implementation.

Analysis of past efforts at reform showed that circumstances, outside the MH system, might have been one of the major reasons for failure of these efforts (2, 4). The global economic crisis of 2008-2009, as well as the internal political change, may cause hesitation on the part of government to launch a structural change in the social-medical arena, committing itself to investing several hundred millions NIS during the next few years.

Although there seems to be wide support for the reform, the coalition is not strongly determined to implement the reform and there has also been a strong opposition to it.

The dilemma for reform supporters is whether and how they can bring the matter to the forefront of the public agenda or whether they are completely dependent on social-environmental circumstances which are beyond their control. Evidence suggests that unless an issue is on the public agenda it is hard to recruit the political and public support needed for achieving a change (69). Given the fact that currently there is no dramatic crisis in the MH service system drawing public attention and in view of the marginality of the population for which the reform is intended, and also considering the current economic crisis, one should not be surprised if efforts to reform the MH system will be stalled.

Furthermore, as we have seen here and elsewhere, at times other issues confronting society serve also as a convenient excuse to avoid the social, professional and ethical minefield of the treatment and care for persons suffering from mental disorders (2). This leads to refraining from radical reforms and preferring a conservative approach, bringing about incremental changes (67).

Hopefully, the group that has been involved for the last 13 years in attempting to pass the reform and which may have created some commitment to the matter, as found in other similar cases of reforms (70), gives a chance to the present planned effort to reform the system. However, enacting the MH reform law will only be the first step. It will require a lot of effort, commitment and political and public support in order to overcome the perils along the way toward reforming the MH services system and improving the treatment and care for persons suffering from a mental disability, as well as enhancing their quality of life.

References 1. State of Israel. National Health Insurance Law proposal (amendment # 41) (mental health)-2007. Reshumot, Law Proposals, The Government, July 18, 2007; 325:872-897 (in Hebrew).

2. Aviram U. Stumbling reform of mental health services in Israel: Factors hindering transference of the locus of services to the community. Soc Welf 2007;27:127-155 (in Hebrew).

3. Aviram U, Dehan, N. The re-organization plan of mental health services in Israel, 1972: Assisting and hindering factors of a reform to community mental health services. In: Aviram U, Gal G, Katan Y, editors. Formulating social policy in Israel. Jerusalem: Taub Center for Social Policy Studies in Israel, 2007 (in Hebrew).

4. Aviram U, Guy D, Sykes I. Risk avoidance and missed opportunities in mental health reform: The case of Israel. Int J Law Psychiatry 2007;30:163-181.

5. National Health Insurance Law of 1994. Book of Laws, 1469. Jerusalem: Ministry of Justice (in Hebrew).

6. Israel Government. Secretary of the government, government decision #2905 Reform in psychiatric services; January 26, 2003 (in Hebrew).

7. Israel Government. Secretary of the government, government decision #568 Transferring the insurance responsibility for mental health services

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from the government to Kupot Holim [health care providers]; October 4, 2006b (in Hebrew).

8. National Insurance Institute (NII). Annual review, 2008. Jerusalem: National Insurance Institute, 2009 (in Hebrew).

9. Aviram U, Zilber N, Lerner Y, Popper M. Chronically mentally ill persons in Israel: Estimating their numbers and characteristics. Soc Secur 1998;53:92-105 (in Hebrew).

10. Central Bureau of Statistics (CBS). Statistical abstract for Israel, # 59.

Jerusalem: CBS; 2008 (in Hebrew).

11. Goodwin S. Comparative mental health policy: From institutional to community care. London: Sage, 1997.

12. Mechanic D. Mental health and social policy: Beyond managed care.

5th ed. Boston: Pearson Education, Inc., & Allyn and Bacon, 2008.

13. World Health Organization (WHO) Regional Office. Europe. Mental health in Europe. Copenhagen: WHO/Europe, 2001.

14. Aviram U, Rosenne H. Estimating the number of chronically mentally ill persons in Israel: Children, the elderly and the total population.

Research report. Israel: the Israel National Institute for Health Policy and Health Services Research, January, 2002: p. 62 (in Hebrew).

15. New Freedom Commission on mental health. Achieving the promise: Transforming mental health care in America: Final report. Rockville, Md.: DHHS Publication No. 03-3832, 2003.

16. United States, Surgeon General. Mental health: A report of the surgeon general. Washington, D.C.: U.S. Government Printing Office, 1999.

17. Murray CJL, Lopez AD, editors. The global burden of disease: A comprehensive assessment of mortality and disability of diseases, injuries, and risk factors in 1990 and projected to 2020. Cambridge, Mass.: Harvard School of Public Health, 1996.

18. Felker B, Yazel JJ, Short D. Mortality and medical morbidity among psychiatric patients: A review. Psychiatr Serv 1996;47:1356-1363.

19. Harris EC, Barraclough B. Excess mortality of mental disorder. Br J Psychiatry 1998;173:11-53.

20. Gubman GD, Tessler RC. Living with the mentally ill: Factors affecting household complaints in familiar and other residences. Schizophr Bull 1987;11:727-736.

21. Gallagher SK, Mechanic D. Living with the mentally ill: Effects on the health and functioning of other household members.Soc Sci Med 1996, 42, 1691-1701.

22. Kessler RC, Heeringa S, Lakoma, MD, Petuchova M, Rupp AE, Schoenbaum M, Wang P, Zaslavsky AM. Individual and societal effects of mental disorders on earnings in the United States: Results from the National Comorbidity Survey Replication. Am J Psychiatry 2008;12:703-711.

23. Ministry of Finance. State Budget: Manpower in the health system (Online) 2007. Available from: URL: http://www.mof.gov.il/budget2007/ fbudget.htm?mediniyut_kalkalit.htm 24. Shamir E. Mental disorders: A stepchild in the Israel health system. In: Aviram U, Ginath Y, editors. Mental health services in Israel: Trends and issues. Tel Aviv: Cherikover, 2006: pp. 137-158 (in Hebrew). https:// www.cia.gov/library/publications/the-world-factbook/fields/2004.html 25. CBS (2008) Press Release 017/2008 (February 5, 2008). Retrieved from: http://www.cbs.gov.il/reader/newhodaot/hodaa_template.html?hodaa =200811017 (in Hebrew).

26. Sartorius N, de Girolamo G, Goldberg D, Costa e Silva JA, Lecrubier Y, Wittchen HU, editors. Psychological disorders in general medical settings. Toronto: Hogrefe and Huber, 1990.

27. Corrigan PW, Mueser, KT, Bond GR, Drake RE, Solomon P. Principles and practice of psychiatric rehabilitation: An empirical approach. New York: Guilford, 2008.

28. Stein LI, Test MA, editors. The training in community living model: A decade of experience. San Francisco: Jossey-Bass, 1985.

29. Aviram U. Mental health policy and services in Israel: Stagnation or progress? Soc Secur 1994;3:48-83.

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30. Tramer L. A proposal for a re-organization of the mental health service system: An integrative comprehensive plan. In: Aviram U, Levav Y, editors. Community mental health in Israel. Tel Aviv: Cherikover, 1981 (in Hebrew).

31. United States Government. P.L. 96 Mental Retardation Facilities and Community Mental Health Centers Construction Act. Stat. at Large 1963;77:88-164.

32. Aviram U. Community mental health in Israel: An interim policy assessment. In: Spiro SE, Yuchtman-Yaar E, editors. Evaluating the welfare state: Social and political perspectives. New York: Academic Press, 1983. pp. 217-231.

33. Kaplan Z, Kotler M, Witztum E. Mental health services in Israel Directions and changes. Harefua 2001;140: 440â&#x2C6;&#x2019;445 (in Hebrew).

34. Ginath Y. The organization and funding of psychiatric services in Israel.

Harefua, 1992;123:264-268 (in Hebrew).

35. Mark M, Shani M. The implementation of mental health care reform in Israel. Isr J Psychiatry Relat Sci 1995;32:80-85.

36. Mark M, Feldman D, Rabinowitz Y. From the Netanyahu report to the National Health Insurance act: Implementation of mental health reform in Israel. Soc Welf 1996;16:185â&#x2C6;&#x2019;197 (in Hebrew).

37. Rosen B. Nirel N, Gross R, Bramali S, Ecker N. The Israeli mental health insurance reform. J Ment Health Policy Econ 2008; 11: 201-208.

38. Elizur A, Baruch Y, Lerner Y, Shani M. The reform in mental health in Israel. In: Kop Y, editor. Alloting resources for social services in Israel.

Jerusalem: Taub Center for Social Policy Studies in Israel, 2004 (in Hebrew).

39. Ministry of Health, Mental Health Services. Mental health in Israel, statistical annual, 2008. Jerusalem: Ministry of Health, Mental Health Services, Department of Information and Evaluation, 2009 .

40. Rehabilitation of the Mentally Disabled in the Community Law of 2001 (RMD). Israel Law Code, 1746. Jerusalem: Ministry of Justice; 2001 (in Hebrew).

41. Shershevsky Y. Rehabilitation package of services for mentally disabled persons in the community. In: Aviram U, Ginath Y, editors. Mental health services in Israel: Trends and issues. Tel Aviv: Cherikover, 2006: pp. 357-387 (in Hebrew).

42. Ministry of Health, Mental Health Services. Mental health in Israel, statistical annual 2004. Jerusalem: Ministry of Health, Mental Health Services, Department of Information and Evaluation, 2004 43. Hadas-Lidor N, Lachman M. Recovery and rehabilitation readings in the mental health field from different perspectives: Practice, policy and research. Kfar Yona, Israel: Litom, 2007 (in Hebrew).

44. Ministry of Health, Mental Health Services. Mental health in Israel, statistical annual 2001. Jerusalem: Ministry of Health, Mental Health Services, Department of Information and Evaluation, 2001.

45. Treatment of Mental Patients Act of 1991. Israel Law Code,1339. 58.

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46. Equal Rights for People with Disability Law of 1998. Israel Law Code, 152. Jerusalem: Ministry of Justice, 1998 (in Hebrew).

47. Basic law: Human Dignity and Liberty of 1992. Israel Law Code, 1391.

150. Jerusalem: Ministry of Justice, 1992 (in Hebrew).

48. Ministry of Finance. State budget. Jerusalem: Ministry of Finance, 19952008.

49. Israel, District Court (2001). C.M (T.A) 225/01 Clalit Health Services v.

Minister of Health (Takdin), 2001 (in Hebrew), and the Supreme Court, CA 9165/02, 10164/02, Clalit Health Services v. Minister of Health (not published). Jerusalem: Ministry of Justice, 2002 (in Hebrew).

50. Aviram U. Screening services in civil commitment of the mentally ill: An attempt to balance individual liberties with needs for treatment. Bull Am Acad Psychiatry Law 1993; 2:195-211.

51. Israel Government. Secretary of the government, government decision #805 Re-organization in the governmental health system, September 15, 2003 (in Hebrew).

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52. High Court of Justice (BGZ). BGZ 466/04, Otzma and others against Israel Government. Jerusalem: Ministry of Justice, 2004 (in Hebrew).

53. Knapp MJ, McDaid D, Mossialos E, Thornicroft G. Mental health policy and practice across Europe. Buckingham: Open University, 2005.

54. Whiteford H, Thompson I, Casey D. The Australian mental health system. Int J Law Psychiatry 2000;23:403-417.

55. Hill R. Selected Issues in mental health: An Introductory Paper, Sainsbury Centre for Mental Health, November 1993.

56. Layard R. The case for psychological treatment centers. BMJ 2006; 332:1030-1032.

57. Layard R, Clark D, Knapp M, Mayraz G. Implementing the NICE guidelines for depression and anxiety: A cost benefit analysis. Center for Economic Performance, London School of Economics, 2006. (http:// cep.lse.ac.uk/research/mentalhealth/dfault.asp) 58. State of Israel. Agreement between the Ministry of Health and the Ministry of Finance regarding the transformation of the full insurance responsibility for MH services the Kupot Holim, September 17, 2006.

59. Fast D. Presentation of the mental health reform plan by the Ministry of Health. Proceedings of the Knesset, Labor, Social Affairs and Health Committee, March 25, 2008, Jerusalem, Israel (in Hebrew).

60. Central Bureau of Statistics (CBS). Press release 198/2008, selected data from Israel Statistical Abstract #59, September 24, 2008 (in Hebrew).

61. Aviram U, Segal S. The exclusion of the mentally ill: An old problem in a new context. Arch Gen Psychiatry 1973;29:126-131.

Commentary 1 Of the substance of “Promises and pitfalls on the road to a mental health reform in Israel” by Uri Aviram (1), I know nothing – or at least I previously knew nothing of mental health reform in Israel. I have no basis upon which to agree or disagree with the analysis. I have no professional experience with the mental health system of Israel. I have not studied mental health policies emanating from Jerusalem. Apart from a fellowship in 1972 while a medical student, I have not been in Israel at all.

But I have a keen interest in mental health policy and mental health services throughout the world, so it is from that perspective that I comment on the thoughtful and impassioned paper by Uri Aviram.

By way of disclosure I have known and admired Professor Aviram and his work for three decades. In 2008 he wrote a favorable review of a book I wrote with the historian Gerald Grob (2) on federal mental health policy in the United States. In his paper Aviram also referenced this work and its central focus on progress due to sequential, incremental reform in the U.S., when fundamental transformation was not feasible or likely.

He draws a contrast between our emphasis on incrementalism and the wish and expectation for fundamental reform of the mental health system in Israel.

It is not that I do not favor sweeping fundamental change. Often anything less than transformation seems

62. Lerman P. Deinstitutionalization and the welfare state. New Brunswick, N.J.: Rutgers University, 1982.

63. Israel State Comptroller. Annual report No. 57b for the year 2006 and 2005 budget year accounts. Jerusalem, Israel: The State Comptroller and Ombudsman, 2006: pp. 375-446 (in Hebrew).

64. Knesset Labor and Social Affairs Committee; 1996. Proceeding of the Knesset Labor and Social Affairs Committee protocol number 463; February 28, 1996, Jerusalem, Israel (in Hebrew).

65. Ministry of Labor and Social Affairs. Director General circular, April 30, 1996, Jerusalem, Israel (in Hebrew).

66. Aviram U, Segal S. From hospital treatment to community care: Observations on process of change in the mental health treatment system in California. Community Ment Health J 1977;13:58-167.

67. Grob GN, Goldman HH. The dilemma of federal mental health policy: Radical reform or incremental change? New Brunswick, N.J.: Rutgers University, 2006.

68. Lamb RH. The new asylums in the community. Arch Gen Psychiatry 1979;36:129-134.

69. Kingdon A. Agenda, alternatives, and public policy. 2nd ed. New York: Harper Collins, 2005.

70. Aviram U, Weyer R. Changing trends in mental health legislation: Anatomy of reforming a civil commitment law. J Health Polit Policy Law 1996;21:771-805.

Howard H. Goldman

inadequate to alter major problems in delivering mental health services. It is just so difficult to implement such radical change. Uri Aviram illustrates this point dramatically in his detailed analysis of (failed) mental health reform in Israel.

Why is fundamental change so illusive?

There is a lack of commitment and political will. What comes through the analysis of reform in Israel is Aviram’s sense of frustration that little of what was expected gets implemented. He portrays a mismatch of need and accomplishment, reform repeatedly falling short. As a naïve reader, I found myself asking, “What is it exactly that needs changing? Who is concerned about the problems? Most importantly, what is the level of commitment to reform?” The analysis is not clear on these questions. The political and societal opportunities perceived by those who pressed for reform are not revealed. The paper does not really answer the critical question, “What is the basis for expecting that the reforms will be implemented?” Without the answer it is hard to evaluate the consequences of the failed reform – for the mental health system, for the service users and their families, and for the broader society.

For the uninitiated reader, the paper does not outline the vision for the reform. What are the services and the 183

Promises and Pitfalls on the Howard RoadH.to Goldman a Mental Health Reform in Israel

treatment technology that will make the reform produce the intended outcomes of improved mental health for Israeli society? What will be the division of labor in the health and social service sectors to implement any reform? And who in the society cares or has a stake in the outcome? Were there divisions of opinion or strategy among the advocates and the politicians? Were there conflicts within the service provider or service user communities? Where is the political will for fundamental reform or even small incremental changes?

Answering these questions may help to understand the sources of frustration of mental health advocates, reflected in Aviram’s story of failed reform.

The focus has been stronger on the organization and financing of care than on the content of care. From the 1970s until the end of the century in the United States advocates and planners of mental health services, particularly for those adult service users with the most functional impairment, focused on the organization and financing of services (2). This focus tended to neglect the content and quality of care and treatment.

The emphasis on organization and financing also is seen in the description of mental health reform in Israel as presented by Aviram. Most of the attention is directed on how to organize services; where to provide them, and how to pay for them. Integration and coordination become ends in themselves, as if the quality of services were already high, needing only to be connected together for service users and their families.

In the U.S. a series of demonstration programs was launched to promote integration of services within systems of care for adults with severe impairments (3, 4).

The evaluations of these demonstrations concluded that it was possible to integrate services without improving measurably the outcomes for service users. The quality of clinical services is limited; there has been a substantial gap between what we know is effective and what is delivered in routine care (5). Similar demonstrations to integrate mental health services for children produced the same results (6). In the wake of these lessons, mental health services have shifted attention to the content and quality of services. This movement toward implementing evidence-based services is somewhat more pronounced in services for adults. Service reforms for children still emphasize integrated systems of care and wrap-around services, while they also work to develop evidence-based services.

Aviram’s analysis briefly breaks away from the almost exclusive focus on organizing and financing care in the 184

paragraphs just before his concluding remarks. After discussing the shortage of resources he argues that two issues “loom” for the future: The lack of a professional workforce capable of delivering high quality services in a reformed system of care and the continued need for more research to provide the evidence-based treatments and services for the future. These are points in common between Israel and the U.S. – and perhaps the whole world of mental health service delivery. I think that this is the most favorable area for policy intervention, and the most important for improving the outcomes of treatment.

There is a lack of appreciation of the potential impact of a well-orchestrated sequence of incremental changes. The 13-year history reviewed by Aviram parallels a similar period in the U.S., where there was a more successful outcome but with a more limited objective. During this period advocates worked for passage of so-called “parity” legislation to improve health insurance coverage of treatment for mental illness, covering services for mental disorders on the same basis as other medical conditions.

In 1996 a federal parity law was passed that focused only on annual and lifetime limits on payment for treatment of mental illness. Dissatisfied with this partial success, advocates pressed for comprehensive parity on a wide array for fronts – in State insurance regulations, in private coverage for federal employees, and back in the U.S. Congress. They succeeded in 2008 with the passage of comprehensive parity in Medicare and in private insurance. The 1996 law had followed a series of incremental changes in Medicare and in the various States starting in the 1980s, and the incremental reforms of the more recent interval culminated in the comprehensive reforms of 2008. These successes demonstrated that reformers persevered, having learned the lessons of “inching forward” in a sequence of incremental steps (2).

Every political context is different. What worked for parity legislation in the U.S. may not work in other countries, such as Israel. Fundamental reform may be possible elsewhere, but Aviram’s analysis reflects the frustration of failed comprehensive reform in Israel.

It also reflects the author’s profound commitment to improving mental health services.

Where are we headed in the United States, and are there lessons for Israel?

The passage of mental health insurance parity legislation in 2008 provides a foundation for considering mental health benefits in the newly passed health insurance reform of 2010. Mental health policy in the U.S. has

Uri Aviram Commentary

made progress in conservative times by having a vision of a model mental health service system and working toward that vision in piecemeal fashion. The results have not always been ideal or even as intended, but slowly the mental health service system has changed.

In their book, Better but not Well, Richard Frank and Sherry Glied demonstrate that in general the mental health of the American people is better now than it was in 1950, although those with the greatest impairment remain at risk of a poor quality of life and limited access to services and benefits (7).

A presidential mental health commission during the Bush administration produced a report with a set of nonpartisan recommendations. Together with the parity legislation of 2008 these recommendations serve as a blueprint for change in the next decade. The past decade in Israel has also witnessed efforts at mental health reform, but without a successful outcome. I think the lesson from the U.S. is the importance of a blueprint with wide support and an impressive imprimatur. When political opportunities arise, a blueprint can guide reform toward a consensus vision of a better future.

In both Israel and the U.S. there are new government administrations, facing extraordinary challenges. Uri Aviram suggests that the current global fiscal crisis may make leaders in Israel hesitant about social change. In the

Commentary 2 Uri Aviram identifies four failed attempts in the past four decades to reform the Israeli mental health system.

In discussing this problem Aviram focuses mainly on people with severe and persistent mental illness. The official policy in Israel has been the integration of mental health services into the general community based healthcare systems. Aviram identifies the first attempt to achieve this as the Tramer Plan initiated in 1972 and based on the U.S. program of community mental health centers (CMHCs) backed by President Kennedy.

It is unfortunate that this American policy was chosen as the model for Israel, since it was doomed for failure in the U.S. The CMHCs were staffed by enthusiastic young people brought up in the 1960s and with an agenda to radically change society. These idealists found themselves faced with the opposition of powerful vested interests, which they lacked the experience to challenge successfully. Furthermore the U.S. healthcare system was, and still is, largely provided by pri-

U.S. the crisis seems to have created a political opportunity for substantial reform. Whatever the political climate, any significant reform legislation will require a commitment to implement changes in mental health policy. Let us hope that the commitment will match the promise of better services. We are more likely to get there with the prodding of thoughtful policy analysts like Uri Aviram.

References 1. Aviram U. Promises and pitfalls on the road to a mental health reform in Israel. Israel Journal of Psychiatry 2010; 47:171-183.

2. Grob GN, Goldman HH. The dilemma of federal mental health policy: Radical reform or incremental change? New Brunswick, N.J.: Rutgers University, 2006.

3. Goldman HH, Morrissey JP, Ridgely MS, Frank R, Newman S, Kennedy C. Lessons from the evaluation of the Robert Wood Johnson Foundation Program on Chronic Mental Illness. Health Affairs 1992;11:51-68.

4. Goldman HH, Morrissey JP, Rosenheck R, Cocozza J, Blasinsky M, Randolph F . Lessons from the evaluation of the ACCESS Program.

Psychiatric Services 2002; 53:967-69.

5. United States, Surgeon General. Mental health: A report of the surgeon general. Washington, D.C.: U.S. Government Printing Office, 1999.

6. Bickman L. A continuum of care: More is not always better. Am Psychologist 1996; 51: 689-701.

7. Frank R, Glied S. Better but not well. Baltimore, Md.: Johns Hopkins, 2006.

Howard H. Goldman, MD PhD Editor, Psychiatric Services, University of Maryland School of Medicine, U.S.A. â&#x20AC;&#x2020; hh.goldman@verizon.net

Julian Leff

vate insurance companies which anticipate no profit from chronic mental illnesses so exclude them from coverage. Eventually the CMHC movement was fatally undermined by the misappropriation of a large part of its funds by President Nixon. It would have been more appropriate for the Israeli government to formulate its plan on the U.K. system, since both countries have the advantage of a national health service, although organized differently.

In fact this was the next attempt to achieve reform: the Israeli Ministry of Health forged an agreement in 1977 with Kupat Holim Clalit, which provides health cover to 80 percent of the population. The agreement was that Kupat Holim, an arm of the labor union, would provide free mental health care and be reimbursed by the government. However, Kupat Holim opted out of this agreement, passing back to the government responsibility for the provision of mental health care. A third effort to affect a shift in focus to community based 185

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services hinged on reform of the insurance system, but this too failed. Aviram places the responsibility for these failures on lack of cooperation by the Ministry of Finance. He cites the stigma of mental illness and its low priority for the public as contributory factors to the lack of will in the Government to ensure solid backing for the attempted reforms.

The success of the deinstitutionalization policy in the U.K. was largely due to consistent advocacy by successive governments, both of the right and the left. This unusual, perhaps unique, consensus was due to quite different thinking. The right believed, incorrectly, that money could be saved by closing the psychiatric hospitals. In fact the cost of a good standard of community care is equivalent to the cost of long-stay care in a psychiatric hospital (1). Only a poor level of community care saves money. The policy of the left was inspired by consideration for the civil rights of people with a mental illness. Yet last year the Labour Government implemented an Act allowing medication to be given compulsorily to people in the community, despite vigorous opposition by the Royal College of Psychiatrists.

There is a parallel here with Israel in that threats of violence against the population, missiles in Israel, terrorist bombing in the U.K., by creating an atmosphere of fear can adversely affect policy relating to mental illness.

There does appear to be some optimism that the Israeli Government is now intent on facilitating the shift to community based services through its own measures instead of relying on reluctant partners. The figures given by Aviram for inpatient beds, length of stay, and the closure of private hospitals chart a move away from the reliance on psychiatric hospital care. On the other hand, the increasing readmission rate suggests that there is a problem with what came to be called the “revolving door patient” in the U.K. and U.S. systems of care.

This resulted from a policy of brief admissions without adequate support services in the community. During frequent visits to Israel over many years I learned that rehabilitation services were poorly developed and very unevenly distributed. This unsatisfactory situation has been improving recently as a result of the RMD2000 Law. However, establishing all the components of a community based mental health service and ensuring that they work together smoothly and efficiently is a massive task which takes considerable time and the investment of substantial funds. In England and Wales, where this policy has been implemented over more than fifty years, with the closure of almost all the 130 psy186

chiatric hospitals, “work rehabilitation programmes are poorly developed and unevenly distributed, and many specialized rehabilitation professionals, such as occupational therapists, are now working as generic mental healthcare workers” (2).

Aviram notes that in 2003 almost half the population in Israeli mental hospitals were long-stay patients.

In the U.K. program it became evident that the least disabled patients were discharged first, leaving a residual population of those who require the most support services in the community. These “difficult to place” patients include a substantial proportion of the “new long-stay” who have been admitted to acute wards fairly recently. It must be recognized that such patients continue to arise in the community after the closure of psychiatric hospitals and that they occupy acute beds on admission wards for long periods of time. An additional demand on admission services stems from the fact that even when previously long-stay patients are settled in sheltered accommodation in the community, crises arise requiring admission to hospital. We found that for every 100 long-stay patients discharged to the community ten were in an admission ward at any one time (3). These two factors have produced a serious problem in the U.K. since they were not anticipated in the planning process, and indeed admission beds were reduced for no reason other than to save money. For some years throughout the U.K. many admission wards have been running at 120% occupancy, necessitating the admission of acute patients to private hospitals at a cost to the National Health Service. There are possible remedies for this problem: a number of innovative alternatives to hospital admission have been tried and found to work, for example the acute day hospital, crisis houses, crisis homes, and 24-hour home treatment teams (4). Difficult to place patients can be moved out of hospital after a period in a specialized rehabilitation facility, which ideally should be placed in the communities from which the patients were admitted (5).

As Aviram states, opposition to deinstitutionalization can arise among professionals who have a vested interest in maintaining their hospital beds, which are seen as a source of status. In the reprovision program in north London the psychiatric specialists in one of the psychiatric hospitals scheduled for closure went on strike and refused to allow any outside agency to assess their patients for suitability for discharge. The strike collapsed after six months and the hospital was eventually closed, demonstrating that managers in

Uri Aviram Commentary

the National Health Service have more power than the psychiatric specialists, one result of the Thatcher revolution. The other major source of opposition stems from the public, many of whom associate mental illness with violence. It is crucial to alter these stigmatizing attitudes, not only to ease the inclusion of discharged patients in the community, but also because public opinion can influence government policy in a democratic country such as Israel. It has been shown that small scale educational programs targeted at specific groups are much more cost-effective than national campaigns (6, 7).

While every country has a unique health system and set of governmental priorities, there are sufficient similarities between Israel and the U.K. for the former to learn from the mistakes the latter made in implementing one of the most comprehensive deinstitutionalization programs in the world.

Commentary 3 Until the end of the 1990s mental health services in Israel was a neglected field.

Contrary to the opinion of Prof. Aviram, no serious efforts to reform the mental health services in Israel were made prior to 1995. The director of the mental health services in the Ministry of Health (MOH), Dr. Tramer, who desired to make changes (The Tramer Plan) did not receive any support from the Ministry of Health leaders. An agreement signed five years later by the Director General of the MOH and the director of the Kupat Holim Clalit – the Menczel-Doron Agreement – was void of any meaning other than being a declaration.

The treasurer of the MOH did not sign this agreement and practically no budget was allocated for the idea’s implementation.

The Netanyahu Commission, which investigated the health services in Israel, devoted a full chapter to the issue of the neglected field of mental health services.

However, even when enacted, the National Health Insurance Act postponed the transfer of mental health services to the Kupot Holim.

During 1995 there was tremendous pressure to transfer the insurance of mental health services to the Sick Funds. However, I am delighted that my colleagues and I failed in this endeavor. Since there were thousands of patients who had been hospitalized for years, the Kupot Holim refused to become responsible for their

References 1. Knapp M, Beecham J, Anderson J, Dayson D, Leff J, Margolius O, O’Driscoll C, Wills W. The TAPS Project III: Predicting the community costs of closing psychiatric hospitals. Br J Psychiatry 1990; 157: 661-670.

2. Harvey SB, Henderson M, Lelliot P, Hotopf M. Mental health and employment: Much work still to be done. Br J Psychiatry 2009; 194: 201-203.

3. Gooch C, Leff, J. The TAPS Project 26: Factors affecting the success of community placement. Psychol Med 1996; 26: 511-520.

4. Leff J, Warner R. Social inclusion of people with mental illness.

Cambridge: Cambridge University, 2006: pp. 68-73.

5. Leff J, Szmidla A. Evaluation of a special rehabilitation programme for patients who are difficult to place. Soc Psychiatry Psychiatr Epidemiol 2002; 37: 1-5.

6. Wolff G, Pathare S, Craig T, Leff J. Public education for community care.

A new approach. Br J Psychiatry 1996; 168: 441-447.

7. Pinfold V, Stuart H, Thornicroft G, Arboleda-Flores G. Working with young people: The impact of mental health awareness programmes in schools in the UK and Canada. World Psychiatry 2005; 4:S1: 48-52.

Julian Leff, Emeritus Professor

Institute of Psychiatry, Kings College London.

1 South Hill Park Gardens, London NW3 2TD, U.K. j.leff@iop.kcl.ac.uk.

Mordechai Shani

insurance. Therefore, a solution was devised that would keep these patients under the auspices of the Ministry of Health. Such a ridiculous solution would prevent the enactment of the Rehabilitation of the Mentally Disabled in the Community Law (RMD).

During 1996 it was becoming clear that nobody in Israel could give a clear assessment of just what was wrong at the root of mental health services. A committee comprised of the Ministry of Health and Ministry of Welfare failed to define how many psychiatric patients in the community needed rehabilitation.

A demonstration project, therefore, was established by the MOH and the Ministry of Finance. Sixty million shekels were allocated to the rehabilitation of mentally ill patients provided they fulfill two criteria: 1. They have at least a 40 percent disability pension due to mental health problems.

2. Their disability pension was not recognized by the National Insurance Institute (NII) prior to January 1, 1997.

This draconic limitation was implemented since the leaders of the project were fearful, due to the limited budget at their disposition, of an influx of thousands of patients who were recognized before January 1, 1997.

The lessons learned from this demonstration project had a strong impact on the proposal for the Rehabilitation 187

Promises and Pitfalls on the Mordechai Road to aShani Mental Health Reform in Israel

Law of the Mentally Disabled Act, led by Member of Knesset Tamar Gozhansky.

Consequently the RMD abolished the draconic limitation of January1,1997, but kept the 40 percent disability pension as the lower limit of eligibility.

The implementation of the RMD was linked by the Ministry of Finance to a proposed reform of psychiatric hospitals. This linkage enabled two important reforms of the Israel Mental Health System between 2001 and 2006.

Here, the targets were as follows: • To gradually allocate funds for the RMD, reaching 300 million shekels in 2005.

• To transfer all patients not suffering active psychiatric disease from hospitals to protected shelters.

• To gradually reduce patient’s length of stay in psychiatric hospitals.

• To reduce the frequency of readmissions.

The implementation of the RMD proved successful, placing 7,800 patients in protected shelters, and a budget of 400 million shekels in 2009.

At the same time there was a substantial increase in the number of places in protected shelters, there was a parallel decrease in the number of beds in psychiatric hospitals.

As Prof. Aviram described, there is a gradual decrease in the number of beds in mental health institutions. This pace has increased from 2000; thus, from a peak of 2.38 beds per 1,000 in 1970, we have reached a ratio of 0.47 per 1,000 in 2008.

Currently, only patients with active disease are hospitalized. While in 2000 there were more than 2,300 patients who were hospitalized longer than a year, in 2008 their number was 950. This seems to be the stable level of acute patients who have an active disease longer than one year.

Furthermore, the average hospitalization of adults hospitalized under a year decreased from 38 days to less than 33 days.

There was, however, a failure in decreasing the revolving doors. The aim was to reduce the revolving door within 30 days after discharge from 18 to 12 percent, and within 31 to 180 days from 43 to 36 percent.

Most of the high readmission rate occurs within 30 days from hospital discharge.

There was practically no improvement in the 30 day readmission rate. The dominant factors in this are the hospitals, whether in regards to the preparation of patients for discharge, or the integration with community services.

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An additional achievement of the structural reform was the closure of private psychiatric hospitals. The only private psychiatric hospitals currently functioning are for the mentally retarded with severe personality disorders.

As Prof. Aviram elaborated, the transfer of the insurance responsibility from the government to the HMO has not been completed. The early dismissal of the previous Knesset prevented proceeding with the issue of getting a bill for reforming mental health passed in the Knesset.

Prof. Aviram believes that the failure of the transfer of insurance responsibility of mental health services to the HMO is due to the circumstantial and contextual factor.

Recently the annual conference of the health system at the Dead Sea devoted itself to discussing the failure of the health system’s various reforms. The general notion was that it is very difficult to introduce reform in Israel’s public service, and that, in general, it is very difficult to introduce reforms in health care systems across the western world.

One must also recall that two reforms – that of the RMD and that of psychiatric hospitals – were successful.

The global financial crisis does not have an impact on the failure, since, even now, the Ministry of Finance remains committed to this change and has allocated the necessary funds.

It was interesting to hear former Member of Knesset Ran Cohen speak at the Dead Sea Conference. Ran Cohen headed the subcommittee of the Welfare and Health Committee of the Knesset, which considered the amendments. During his speech Cohen said he was originally antagonistic to the reform, since he viewed it as privatization that would cause damage to the patients and problems to the RMD. However, after learning all of the details and the various amendments to the proposed law, he became an ardent believer in the law.

It is too early to predict whether the government will continue with the legislation to transfer the insurance to the HMO. It should be recalled that also in the Netherlands, reorganization of the mental health services insurance was enacted only in 2008 (1).

However, even if the insurance should not be transferred to the HMO, I do not see any possible damage to the two successful reforms. There is constant supervision of data and, in spite of the data presented by Prof.

Aviram, until June 2009 there was no negative effect of the RMD or on increasing the burden of hospitalization. The hospital admission rate, occupancy and average length of stay are stable.

Even if the legislation should pass in the near future,

Uri Aviram Commentary

the actual process of integrating mental health services into primary care is a long one.

In Spain, the 1986 General Health Care Act reorganized the country’s health insurance, and the completion of the Health Care Decentralization to the 17 autonomous communities was completed in 2002. However, the absence of psychological and social services being integrated with primary care remains the norm rather than the exception (2).

There is, therefore, a strong committee in the Ministry of Health which will supervise the outcome of the reform

Commentary 4 Why did the Insurance Reform in Mental Health in Israel fail?

The paper by Aviram is a retrospective survey that follows-up 15 years of prolonged failure of the Ministry of Health to implement the National Health Insurance Act (NHIA) on Mental Health. Two major reforms were planned: (a) dramatic decrease in the total number of psychiatric beds (known as the constructional reform) and (b) transfer of the responsibility for all mental health services from the government to the medical insurance companies (the insurance reform). These changes were planned to catch up with international policies where the main avenue for mental health care is in the Community Mental Health Centers (CMHCs) and primary medical care.

In the 1990s, mental health services in Israel, both psychiatric hospitals and community facilities, were highly developed, with national and international recognition of their achievements (1-5). Many clinicianresearchers achieved recognition in international professional organizations, psychobiological researchers such as Belmaker, Zohar, Kaplan De-Nour, Lerer, Klein and Shalev, and psychotherapists and psychoanalysts such as Moses, Klein, Noy, Winnik, Zellermayer, Ilan and Gumbel.

The Netanyahu Commission Report (6) had two major criticisms of CMHCs: (a) the weight of professional mental health services in Israel was provided by hospitals and not by CMHC, (b) a lack of CMHC services in the peripheral areas. Lack of services in the peripheries is characteristic not only in regard to CMHCs but also general medicine, education and culture. Although the resolution of this inequality could have been carried out by the Ministry, it was this

and no funds will be allocated to other purposes from psychiatry.

References 1. van Hoof F, Kok I, Vijselaar J. Liberalisation of health care in the Netherlands: The case of mental health care. Eurohealth 2008; 14: 18-21.

2. Costa-Font J, Cabases Hita J, Alonso J, Salvador-Carulla L, McDaid D. New and old challenges in the reform of mental health systems in Spain.

Eurohealth 2008,14:14-18.

Professor Mordechai Shani

Chaim Sheba Hospital, Tel Hashomer, Israel mshani@post.tau.ac.il

Gaby Shefler

detail that was held up as a trigger for these two major reforms. Neither the Netanyahu Report nor any of the articles written by supporters of the insurance reform (7, 8) criticized the professional level of the CMHCs. The Ministry of Health and its mental health services division were very enthusiastic to implement the NHIA. In addition, they sought to transform the mental health services division from active responsibility for the hospitals and CMHCs into a ministerial unit that plans national policies regarding mental health, and supervises their implementation (as recommended by the Netanyahu Report).

The constructional reform was successfully implemented. Table 1 in Aviram’s article shows that within 10 years the number of beds decreased by 48%. A more detailed look, however, shows that 91% of the private beds were closed while only 23% of government and 24% of public psychiatric beds were closed. These numbers create bias in the costing of the change: One would have expected that a 50% reduction in the number of beds would result in an equivalent reduction in the in-patient budget, which did not happen. The closed beds were in institutions that ran at very low standards and very low cost. It was the Ministry of Health that had, in the first place, created these two levels of poor and rich psychiatric hospitals, and by selective closure of low cost private psychiatric beds, the hospital budgets were unchanged.

The constructional reform succeeded because it was professionally justified, and because it was directed by the “experts” – the directors of psychiatric hospitals. This did not lead to a shift of budget to CMHC, Table 5 shows that in the same period 97% of the total budget was allocated to hospitals and 3% to community care. Not one psychiatric government hospital was closed. Of interest, 189

Promises and Pitfalls on theGaby RoadShefler to a Mental Health Reform in Israel

despite the bed reduction, the total number of patients did not change, implying that the hospitalizations became much shorter. The closure of beds must have resulted in more patients attending CMHCs, and yet the budget for CMHC not only did not grow but was reduced by 40% over 10 years (Table 4).

The insurance reform is a form of privatization of a government service, but with a strange basis: the government will pay the insurance company en bloc for the expected treatments for the whole year, and the insurance companies will be responsible to supply all mental health services according to an agreed services basket, most of which they will purchase from professionals organized in various forms. Instead of improving the efficacy or the transparency of decisions taken in CMHCs, the ministry planned to shut down all the government CMHCs. This drastic move, later canceled, could only be understood as a declaration that the standards of CMHCs over the decades were inadequate and their replacement would be an improvement.

CMHC providers were concerned about the services basket â&#x20AC;&#x201C; what is included and what is excluded, and who are the professionals who deliver those services. It was clear that the insurance companies sought a minimum basket of services, and started planning and compiling lists of independent professionals to supply cheaper services for various forms of psychotherapy.

The process of implementing the insurance reform was run mainly by psychiatrists, most of them past and present directors of psychiatric hospitals, while most of the professionals within the community services were excluded from the discussions and decision-making procedures and I see it as one of the major reasons why it did not work. The insurance reform is a political rather than professional act, directed with power and arrogance, but with little professional expertise.

There are many additional reasons for the failure of the insurance reform: the refusal of the finance ministry to provide the additional budget required, the resistance of the CMHC directors, interest groups such as patients and their families, and professionals worried for the future of patients and professionals. The professional standards achieved in community psychiatry were threatened, with the possibility of staff losing their jobs, and CMHCs shutting down.

CMHC workers were convinced that when the medical insurance companies would become the paymasters for community mental health, due to budget considerations they would do everything possible to limit 190

and minimize their obligations toward the patients.

Diagnostic groups were excluded from treatment: situational crises and adjustment disorders (i.e., people suffering after aggression or sexual abuse, unemployment, patients suffering responses to physical illness, stress due to social factors, etc.). Psychotherapy in various forms and particularly long term dynamic psychotherapy were threatened from several quarters: (a) The health insurance companies started encouraging GPs to perform crisis intervention based on medication and basic skills of therapeutic relations. From personal communications with GPs, and statements made in the committee of Labor, Health and Welfare at the Knesset, it is clear that primary care physicians have neither the time nor the training for such interventions. Goldfracht et al. (9) surveyed 99 primary care physicians and found 37% had little interest in treating mental health problems, 47.7% thought these issues best treated in CMHCs, and 43.3% declared they have experienced personal difficulties in treating psychiatric and mental health patients, while 85% identified time constraint as a major barrier in the care of mental health issues in primary care. (b) A major decrease in training and supervision hours will restrict the level of psychotherapy and (c) parts of the new services basket were based on very general assumptions of the usefulness of short term treatments. These considerations were superficially calculated and were settled by a fixed limit of the number of therapeutic sessions each person is entitled to (usually 24). These decisions were not taken with regard to research findings in Israel (10, 11) that showed that time limited psychotherapy is suitable for only about 20-30% of the patients in an average CMHC assigned to dynamic psychotherapy.

The years have passed, governments and health ministers and directors of the services have come and gone â&#x20AC;&#x201C; and the insurance reform has not proceeded, despite the effort invested by administrators and professionals in the ministry and the Reform Advisory Board.

Roe et al. (12) state that no empirical evaluation of psychiatric rehabilitation was performed in Israel since the implementation of the Rehabilitation Law. During such a long period one would similarly expect that the ministry would initiate studies in order to know empirically about outcomes and efficacy of various modalities of treatments, the proportion of the population referred to CMHCs, etc. The only study we are aware of (13) found that 46% of a representative sample of Israel residents prefer to consult on mental health issues with experts in CMHCs, while only 35% prefer a primary care clinic.

Uri Aviram Commentary

From those of the sample who had received treatment in a CMHC, 78% were satisfied with the service.

One of three blocked health reforms that were analyzed in a 2009 conference was the insurance reform in mental health services. The presenters stated that: “Many factors contributed to the blocking of the insurance reform, and the main factors are: (a) complaints of many of the participants in this reform of ’lack of transparency,’ (b) lack of reliable and available data to all the participants, and (c) lack of research base” (14, p.34).

High levels of stigmatization and stereotyped thinking typify Israeli society (15, 16). Despite these findings, the increase in numbers of referrals to CMHC indicates that patients are not stopped by stigma in referring to CMHCs. A growth in the number of patients in government CMHCs between the years 1999 (46,961 patients) to 2005 (66,762 patients) reflects an increase of 42%, and a decrease of 5-8% in these numbers towards 2007, a decrease explained by technical reasons of computers systems (17). This growth suggests stigma does not deter referrals to the present system.

The Ministry of Health in an attempted unilateral action submitted the insurance reform as a bill of parliament and in 2005 the Knesset approved its first vote.

The committee for labor, social and health affairs wisely decided to transfer the proposal to a sub-committee headed by MK Ran Cohen for further discussions. The discussions of this subcommittee took over six months and every detail was debated. This process revealed the intentions of administrators versus CMHC professionals, consumer organizations and the complex motives of the reform planners, government and medical insurance companies.

Important issues remain unresolved in regard to the insurance reform: confidentiality in that the identity of patients in CMHC care were not known to the insurance companies, out-reach in response to calls from the community and the management of uncooperative patients.

From an economic viewpoint, the insurance reform is bound by needs versus budgets. As in politics, conditions are viewed in a narrow lens and may create irreversible problems. If the insurance reform is carried out, due to the very limited resources allocated for professional staff training we may find ourselves with no continuing professional education, and in the future a massive dearth of professionals. In the short term, there will be a decrease of students and interns applying to the

helping professions. The medical insurance companies claim (rightfully from their perspective) that they are responsible only for mental health service delivery and not for training and research, goals usually taken care of on a national scale by the state and the government.

The insurance reform has not been implemented, although some improvement in controls, reporting and organizing systems were adopted during the preparations for the reform. On the other hand the government strangled the CMHCs both in manpower and in morale, and, although no CMHC has been closed as planned, in many CMHCs there is a severe shortage of manpower and decrease in staff morale. Thus far, there has been little benefit from the reform process but a lot of harm.

This prolonged process in which the staff of CMHCs was reduced (as a preparation for handing over responsibility to the medical insurance companies), retiring or resigning staff were not replaced. In addition to the demoralization among the staff and functional decomposition of the CMHCs, this created prolonged waiting lists for psychotherapy, and refusals of treatment due to lack of personnel.

By allocating the budgets that were allocated to the insurance reform, and by engaging the professional skills and motivation of CMHC staff, the deficiencies of CMHCs could be repaired. Mental health, and especially community mental health, are not profitable, and should not be privatized. It should remain under the auspices of the government.

The ministry of health should open new CMHCs in the periphery. Training programs for mental health practitioners in all professions should remain the responsibility of the ministry. Leaving the training in one hand and the supply of services in private economics-driven agencies will lead to a decrease in the availability of these services to the public, and will set us years back.

The insurance reform was not planned as a benign professional reform, rather an oppositional antagonistic act against what was taken to be an ineffective service.

I think that the ministry of health cannot discharge itself from the responsibility of this non-profitable crucial service, and it has to continue to administer CMHC services with improvements, incorporating new intervention methods, and with cooperation of the CMHC professionals in order to regain its previous professional level and pride. Any other option is less desired, as proved by the endless unsuccessful efforts with no result to implement the insurance reform.

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References 1. Maoz B, Tyano S, Wijsenbeek H, Erez R, Baron M. Community psychiatry in border settlements in Israel. Soc Psychiatry Psychiatric Rehabil 1976; 11:163-169.

2. Levy A, Neuman M. Community psychiatry rehabilitation in Israel. Int J Rehabil Res 1988;11:37-46.

3. Hershko S, Ophir M. Community mental health services in Israel: Current status and future trends. Isr J Psychiatry Relat Sci 1993; 30:142149.

4. Lerner Y, Zilber N, Wittman L. Utilization patterns of community mental health services by newly referred patients. Soc Psychiatry Psychiatric Epidemiol 1993; 28:17-22.

5. Kates N. Services trend in Israeli mental health system. Hosp Comm Psychiatry 1994; 45:480-484.

6. Report of national commission for investigation of the functioning and efficacy of mental health system in Israel (S. Netanyahu Commission) 1990.

7. Mark M, Shani M. The implementation of mental care reform in Israel.

Isr J Psychiatry Relat Sci 1995; 32:80-85.

8. Mark M, Feldman D, Rabinovitz J. From the report of the Netanyahu Commission to the National Health Insurance Act: Implementations of reform in mental health. Society Welfare, Quart Social Work 1996;16:185-199.

9. Goldfracht M, Shalit C, Peled O, Levin D. Attitudes of Israeli primary care physicians towards mental health. Isr J Psychiatry Relat Sci 2007;44:225-230.

10. Witztum E, Dasberg H, Shefler G. A two year follow-up of Time Limited Psychotherapy Community Mental Health Center in Jerusalem. Isr J Psychiatry Relat Sci 1989; 26:244-258.

Author’s response Unfortunately, since this article was accepted in September 2009, the saga of attempting a mental health reform has continued. Recently, however, after a year and a half of hesitation and indecision, the government has decided to pursue its attempt to reform the mental health system, and has asked the Legislature to renew the legislative process leading to the planned reform (1, 2). We have yet to witness the completion of the process, the enactment of the reform, and, of course, its implementation However, there seems to be some hope ahead.

There is no doubt that when planning a reform, the social and political conditions and circumstances of the country need to be examined. Leadership, commitment and ongoing political support are a necessary condition for the success of any attempt to bring about substantial change in mental health services.

As can be inferred from the commentators, we can learn about the field of mental health services from the experience of the United States and of Britain, as well as other countries such as Holland. Unlike Israel, Britain succeeded in closing down most of its mental health hospitals.

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11. Shefler G, Dasberg H, Ben Shakhar G. A randomized controlled outcome and follow-up study of Mann’s time limited psychotherapy. J Consult Clin Psychol 1995; 63:585-593.

12. Roe D, Gross R, Kravetz S, Baloush-Kleinman V, Rudnik A. Assessing psychiatric rehabilitation (PRS) Outcomes in Israel: Conceptual, professional and social issues. Isr J Psychiatry Relat Sci 2009; 46: 103110.

13. Struch N, Shershevsky Y, Baidani-Auerbuch A, Lachman M, Sagiv N, Zehavi T, Levav Y. Attitudes, knowledge and preferences of Israeli public regarding mental health services. Isr J Psychiatry Relat Sci 2008; 45:129140.

14. The Israel National Institute for Health Policy and Health Services Research. Preliminary Discussion, 10th Dead Sea Convention, June 2009.

15. Amir T, Roe D, Carrigan P. Mental health illness stigma in the Israeli context: Deliberations and suggestions. Int J Soc Psychiatry 2007; 53:547-563.

16. Levav I, Shemesh AR, Kohn R, Baidani-Auerbach A, Boni O, Bornstein Y, Dudal R, Lachman M, Grinshpoon A. What is in a name?

Professionals and service users’ opinion of the Hebrew terms used to name psychiatric disorders and disability. Isr J Psychiatry Relat Sci 2005; 42: 242-247.

17. Ministry of Health. Mental Health in Israel. Statistical Annual 2008, Jerusalem, 2009.

Professor Gaby Shefler,

Senior Clinical Psychologist and Training Analyst, Chief Psychologist of Herzog Hospital, Jerusalem, Director of Freud Center at the Department of Psychology at the Hebrew University, Jerusalem. msshef@mscc.huji.ac.il

Uri Aviram

Similarly to what occurred in the United States (3), the initiators and planners of the reform in Israel believed that the organizational and financial changes would lead to a change in the nature and quality of the services. However, as Howard Goldman stated, other countries’ experience shows that organizational and financial changes do not guarantee the quality of care in mental health services. These lessons must be remembered once the planned reform in Israel moves to the implementation stage.

Furthermore, it seems that some of the supporters of the reform are also interested in a financial saving for the government’s treasury. It is appropriate that decision makers in the field of mental health in Israel take into account Leff ’s comment regarding the cost of appropriate community mental health services.

Of the two Israeli commentators, Mordechai Shani supports the reform, and was one of its designers, and Gaby Shefler opposes it. Although I disagree with the latter’s negative stance regarding the importance of the insurance reform, and consider the integration of

Uri Aviram Author’s response

mental health services with general health services, and transferring the responsibility to the healthcare providers as a crucial part of changes needed, I do agree with some of his comments regarding the quality of care, the need of a clear definition of the range of problems to be taken care of in the mental health system, and the standards of manpower and its training.

Gaby Shefler positively notes the structural reform, but ignores the rehabilitation reform, which was a necessary, though not the only, condition for the success of the structural reform. In addition, the picture Shefler presents regarding the quality of ambulatory services in mental health may be misleading. Though there may be a high level of treatment knowledge, his evaluation of the level of the system’s functioning and its organizational efficiency is surprising. The supply and extent of services is far from satisfactory and the budget for community clinics decreased in the last decade. Previously also, the supply of services was far from satisfactory.

The waiting time for receiving treatment has become longer, and the fact that many people who had the financial resources were forced to turn to the private market, while others who didn’t have the resources to do so remained without treatment, implies that the community system is lacking.

Gaby Shefler wishes to broaden the diagnostic categories included in the legitimate subjects for treatment in the suggested reform, and to enable long-term psycho-dynamic therapeutic technologies for use in services rendered. The range of legitimate problems for treatment in the framework of community treatment services is an important subject worthy of a serious discussion. However, it is hard to believe that in the existing financial reality, with the manpower employed, the priorities needed and reliable and valid knowledge in the field, adopting long-term psychodynamic treatment methods is possible or even worthy.

I am doubtful if the main or only motive of government mental health clinics’ psychologists’ objection to the insurance reform in mental health is due to their concern for the level and quality of services or the needy population; and not also driven by an interest to keep their autonomy and professional monopoly along with a financial interest of preserving the private mental health market. However, they are justified in their concern over the conditions of their future employment, and the government must be sensitive to these concerns.

I do agree with Gaby Shefler’s comment on the ongoing harm for ambulatory services and its effect on the

level of mental health services which is offered. The mental health system – hospitalization, community clinics, and community rehabilitation – is an integrative system. Inadequate functioning in one of the components harms the others. It may be that the phenomenon of the “revolving door” and the fact that the structural reform hasn’t stood up to part of the expectations regarding recurrent hospitalizations and living in the community as Mordechai Shani states, can be explained by a failure of the ambulatory and rehabilitative systems.

It may be true as Shani says that since the 1990s there is more interest in mental health, partially due to the Netanyahu Committee (4) and the National Health Insurance Law (5). However, I disagree with his opinion that prior to this period there was no interest in the mental health system in and no attempts to change it.

Although it is true that during the 1990s there was a turn-around in the stance of the Ministry of Finance, and its involvement is crucial for implementing changes in the system; during the 1970s, there were also significant attempts at a reform. There is empirical evidence that Dr. Tramer, the head of mental health services in the beginning of the 1970s, had support and backup from at least part of the leadership of the mental health services as well as from the heads of the Ministry of Health (6). Direct funding from the State’s budget isn’t necessarily a condition or an exclusive catalyst for a reform. In the case of Tramer’s reorganizational plan, one of the factors assisting support in the plan was the fact that it enabled raising philanthropic contributions for developing the plan, which in turn, assisted in financing the regular mental health services as well as in developing new community service plans in mental health (6).

Contrary to Mordechai Shani’s claim, the agreement signed in 1977 between Menczel (Director General of the Ministry of Health) and Doron (Head of Kupat Holim Clalit), also had the support of the Ministry of Health. In the beginning it was also funded by the budget, however later, because of a technical problem of a missing document, and/or a change of stance of the Ministries of Health and Finance, it wasn’t financially honored. I have no reason to doubt these facts, as Shani was the Director General of the Ministry of Health after Jacob Menczel served his tenure, and he was probably involved or even responsible for Ministry of Health’s change of stance on the matter. This being said, when the agreement was signed, the heads of the Ministry of Health, including the Minister serving at the time, backed up the agreement and supported it. In addition 193

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to their desire to improve mental health services, which were in bad shape at the time, and their desire to implement the Tramer plan, they saw in the plan a preliminary attempt to implement a national insurance plan, which Victor Shem-Tov, the Minister of Health at the time was trying to advance. Because of Clalit’s objection to legislate a national health insurance law at the time, and because of its dominance in the country’s healthcare system, the Ministry of Health thought that the regional organization of mental health services, included in the plan, could be a step towards the desired change in the overall health system. In the eyes of the mental health services, the plan had an influence on regional distribution of the services. This influence expressed itself mainly in geographical regions with excess numbers of inpatient beds, and where arrangements between service suppliers needed to be negotiated.

Formally, the Ministry of Health decided not to respect the agreement, however Clalit healthcare services didn’t agree to the interpretation and the decision of the Ministry of Health. In years to come, during the budget discussions between Clalit and the Ministries of Health and Finance regarding the coverage of the yearly deficit of Clalit, the latter turned in the bill for psychiatric services as included in the general deficit calculation. Thus, during many years, the psychiatric services and their budget were taken into account while calculating the State’s support for Clalit. Only after twentyfive years, following rulings of the district and supreme courts (7, 8) the fields of responsibility of the healthcare providers and of the State regarding supplying and funding mental health services were determined clearly, and the disagreement regarding the interpretation of the Menczel-Doron agreement came to an end.

As these lines are being written, the fate of the mental health reform is still not clear. Sixteen years have passed since the country’s legislature decided within the National Health Insurance Law that during a period of three years, mental health services will be transferred to the responsibility of the healthcare providers. As shown, a number of government decisions, and a first reading decision of the Knesset (9), didn’t bring an end to the process. It isn’t the place in this document to analyze the reasons for the situation and its meaning for mental health services or for policymaking in general in Israel.

However, it is important to emphasize that continuation of this situation of a lack of decision, which brings

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about damage and demoralization among the mental health workers and in the system in general, also risks the reforms achieved so far, and gravely harms the people in need of the mental health system.

It may be, as is the opinion of Howard Goldman, that the chance for a radical reform in mental health is slight. It may be that incremental reform of the system is the realistic and optimal alternative. Howard Goldman justly states that there is a need for a comprehensive plan which will clearly elaborate a vision and goals, and with time – when there is a political opportunity for implementing the plan or parts of it – it will be presented and implemented. In order for this to happen, in addition to a detailed contingency plan, there needs to be a professional bureaucratic and civil lobby, which will be ready to organize and take advantage of a political and social opportunity in order to promote the change in mental health services, and improve the treatment and care for people who suffer from psychiatric illnesses and mental health problems in general.

References 1. Knesset approved continuation of the legislative process regarding the mental health, Maariv Daily, July 12, 2010: www. nrg.co.il/online/29/ ART2/122/444.html (in Hebrew).

2. The Government announcement of its intention to apply the rule of carry-over of legislation of a proposed law (No. M/325; “Divrey Haknesset,” 17th Knesset, Second session, booklet 36 (in Hebrew).

3. Grob GN, Goldman HH. The dilemma of federal mental health policy: Radical reform or incremental change? New Brunswick, N.J.: Rutgers University, 2006.

4. Netanyahu Committee. National commission of inquiry into the functioning and efficiency of the health system in Israel. Report, vol. A, Majority opinion, vol. B. Minority opinion. Jerusalem: The Government Press, 1990.

5. National Health Insurance Law of 1994. Book of Laws, 1469. Jerusalem: Ministry of Justice (in Hebrew).

6. Aviram U, Dehan N. The re-organization plan of mental health services in Israel, 1972: Assisting and hindering factors of a reform to community mental health services. In: Aviram U, Gal G, Katan Y, editors. Formulating social policy in Israel. Jerusalem: Taub Center for Social Policy Studies in Israel, 2007 (in Hebrew).

7. Israel District Court, C.M (T.A) 225/01 Clalit Health Services v. Minister of Health (Takdin), 2001 (in Hebrew).

8. Israel Supreme Court, CA 9165/02, 10164/02, Clalit Health Services v.

Minister of Health (not published), Jerusalem: Ministry of Justice, 2002 (in Hebrew).

9. State of Israel. National Health Insurance Law proposal (amendment # 41) (mental health) 2007. Reshumot, Law Proposals, The Government, July 18, 2007; 325:872-897 (in Hebrew).

Professor Uri Aviram,

Karkur msaviram@mscc.huji.ac.il

Isr J Psychiatry Relat Sci - Vol 47 - No.3 (2010)

Elliot

My life as a Mental Health Consumer Elliot

Preface: I’m going to write of some rather powerful incidents as a youth, having just arrived in Israel, and soon to enter a painful and prolonged battle with serious mental illness (SMI). The scenes still appear in my memory as freezeframes of compelling intensity. To balance the starker sections, I’ll describe some hopeful new approaches for adolescents, offering them hope for a better life. I’ll also outline my basic philosophy for living a life with SMI, as we really do need a reason to believe. And this philosophy remains for me a fountain of optimism and vitality, in the face of things that should never have been.

This brief essay isn’t for everyone. But I hope you, my readers, will find, beyond the overt pain evident here, a flow of dignity, meaning and purpose which transcends my suffering, and that of many others. Our spirits thirst for belief and healing, even when faced with impossible odds. Without our hope, without a true role for us to play in this world, no medication can ever heal us.

First impressions are lasting impressions Losing one’s innocence isn’t unusual in adolescence.

Mine was lost when my family first drove through the gates of Abarbanel Hospital, in Bat Yam, Israel. Those gates closed behind my family and me, with a clank of finality.

More freeze-frames remain from this first encounter. We four were walking down a long, wide lane. On one side stood open pavilions painted in fading beige, on the other were tall buildings with barred windows.

On the third story of one of those buildings, a fellow in his twenties was leaning out of a barred window, singing as loudly and out-of-tune as he could. There were wizened old women, slouching on the walls and begging for handouts of cigarettes. It was like a third world country, a country of poverty. A year after leaving a placid Midwestern city, here we were encountering

these impossible scenes.

I can imagine the shock my parents felt. There was a feeling of being helplessly devoured by the system, that here was where their son might be for the long run.

I think it testifies to our hardiness of character that so many years after that long walk my family is still all here, and all close.

Surviving in the system The month was December 1975; I was 16; in the open youth ward at Abarbanel Hospital.

As the weeks turned into months, I made it a point to keep active. I was declaring to one and all that I was still doing just what I needed to do to keep my morale high.

I needed this distance from the other teenage patients in the ward, and maintaining it helped ease my entry into what, still for me, is an unwanted identity.

I painted the inner walls of the courtyard with psychedelic colors. And I pushed the trolleys full of steaming hot food to the other wards for lunch.

One afternoon in the youth ward, I was boning up on my physics textbooks (I’d technically dropped out of high school upon my hospitalization). A well-meaning male nurse informed me of the total pointlessness of studying for high school exams. “Slow down, take it easy; you’ll have plenty of time to study later on.”

Looking back, I see this staff member’s attitude as a profound mistake, and bad medicine as well. Taking away somebody’s hope will keep them from getting stronger. Studying that physics textbook may not have helped me immediately. But it stoked my ambition, my hope for a better future, and gave me a reason to believe.

That physics textbook preserved the distance I so badly needed from the others.

At the same time I must give credit to many staff members, in particular Dr. Alexander Zeidel, for dedication and care beyond the call of duty. Things aren’t always black and white, and hospital staff members aren’t always demons; for me, he helped make the youth

amiraelliot@bezeqint.net

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My life as a Mental Health Consumer

ward an oasis of humanity in the sprawling archipelago that is Abarbanel.

Viktor Frankl as required reading It is no accident that Viktor Frankl’s book, Man in Search of Meaning (1), is often the reading of choice for the fledgling mental health consumer. Many of us are familiar with Frankl’s writing, that feeling of separateness in the midst of crowds, our portion of suffering not easily shared, when re-entering society at last.

Sue Estroff writes, in Making it Crazy (2), of that gradual entering into a separate identity, its becoming almost second nature, to the point that one can even feel comfortable with it, revel in it, or use it to one’s advantage. I had realized its danger to me early on, and found ways to avoid it.

So I made it a point to put distance between myself and the “I don’t feel good” subculture. I left home to live on my own, with regular flat-mates located through posted ads. Soon I began introductory studies at a local university. I found employment on the open market where (presumably) my “secret” was safe. When interviewed by potential employers, and things turned ticklish, I concealed my background, because Army service was often required.

But as time passed, I found myself gravitating once more towards others who had “been there.” There are just so many hoops you can jump through on the way back to the land of the living, and the price is often too dear. So it is that many or most of us return reluctantly to the cold comfort of the “mental” subculture.

Many survivors carry deep within a rage born of the injustice we’ve undergone, that we’ve witnessed. But we are silenced. Our experiences remain unvoiced and unwritten. Our narratives are not considered legitimate or acceptable. We’ve learned from harsh experience, that “only another one of us could really understand.” And we remain marginalized, the last group left un-liberated on the fringes of Israeli society.

Some prominent activists, with the credentials needed to succeed in the “real world,” have still returned to work within our community. By and large we are good and principled human beings. Working for systems change can be frustrating and stressful. But we’ve been identified with the cause and it’s hard to turn around. In any case one takes a stand in life, and you’ll pay the price whether you take your stand or you turn your back on it.

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Somewhere along the way we broke away from the rest onto an uncharted pathway. How to manage this new identity with integrity? Working psychiatrists dealing with recovering patients should be aware of our dilemmas, because you need to understand what makes us tick. These issues of how we recover with resilience are more than just questions of medication dosages.

Sexuality, intimacy and our lives I want to use this platform to address an issue seldom acknowledged by mental health professionals: our sexuality, our right to intimate relationships and parenthood. It seems assumed by MH personnel that we are either asexual or incapable of maintaining a stable intimate relationship. Or worse, that any relationship will become violent, abusive, etc. The truth is, sexuality isn’t an inconvenience that will just go away. You can ignore the issue and people will go right on ahead. You can clamp down, and lonely people will be even lonelier.

My marriage at age 41 made me a lucky and very happy man. We know many other couples struggling before incredible odds. Mitmodedim (literally, "copers", a term developed in Israel by and for people coping with severe mental illness) must be worked with to help enable healthy and responsible relationships. We are a high-risk group and deserve to be invested in like other such groups.

Back in the ’70s I was a teenager, and under strong pressure -- social pressure for success in college or in Army service, and media pressures to be a “real man,” whatever that meant. It seemed to me to be everything I wasn’t, I should try to be.

I was under strong pressure and I broke. What I didn’t know was my high-risk age for SMI (serious mental illness).

I was a high-risk kid, newly arrived in a strange culture, lacking community support. I’ve had plenty of time to learn since then.

Programs from abroad – enhancing the natural resilience of youth Today it is more possible to prevent SMI in young people, or to improve living with SMI once it sets in. There exist new and exciting community-based programs to help prevent SMI developing in young people. Some use mentoring for youth at risk (3). Others employ more open and supportive families, schools and cit-

Elliot

ies (4). Parents of children at risk have been trained in methods to empower them and strengthen their inborn resilience. There’s a program in Australia which works to help teenage boys integrate back into the community after leaving the hospital (5). Would these approaches work here in Israel? Could kids be helped to avoid that vicious “revolving-door” cycle in and out of hospitals?

I was there. Nobody else needs be.

Closing words I want to re-state what Viktor Frankl said: the reason we survived, while others did not, comes down to finding meaning in the ordeal of our lives and recovery, in the shadow of chaotic and unpredictable trials.

What we underwent should never have happened.

Living with injustice, we seeking tikkun olam – the term in Judaism for acting to create righteousness in an unjust world. Sometimes I wonder if tikkun olam motivates social activists, whether we know it or not.

In the final reckoning, it’s no one’s fault. We never asked for this stuff. None of us activists are here for fun. Rather, it is our nearly-impossible task to try and

help move things forward in this challenging field, in this stressful country.

Finally I say: If I hadn’t chosen this path in life, it might well have chosen me. There is purpose to my story, and to those of others.

When all is said and done, people with mental illness testify to the human knack for sheer survival. And looking back, I say it has been worthwhile. The world is good, and my life has meaning. And justice must prevail, at least for today – if only because we are here, and we are working to make it so.

References 1. Frankl Viktor E. Man’s search for meaning. New York: Pocket Books, 1985.

2. Estroff, Sue E. Making it crazy: An ethnography of psychiatric clients in an American community. Berkeley: University of California, 1981.

3. Compeer Friends: Making friends, changing lives.Accessed March 15, 2008, at: http://compeer.org/results.htm 4. Smith, Annie. School, family and friends matter: Improving mental health in young people. Visions Journal 2006; 3, 2. Accessed March 15, 2008 at: http://www.heretohelp.bc.ca/sites/default/files/images/11.pdf 5. Lloyd C, Williams PL, Sullivan D. Kick’n’On: Helping young males kick back into life. Accessed March 15, 2008, at: www.ausienet.com/ journal

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Australian Mental Health Consumers’ Contributions to the Evaluation and Improvement of Recoveryoriented Service Provision Sarah L. Marshall, PhD, Lindsay G. Oades, PhD, and Trevor P. Crowe, PhD Illawarra Institute for Mental Health, University of Wollongong, Wollongong, New South Wales, Australia

ABSTRACT Background: One key component of recovery-oriented mental health services, typically overlooked, involves genuine collaboration between researchers and consumers to evaluate and improve services delivered within a recovery framework.

Method: Eighteen mental health consumers working with staff who had received training in the Collaborative Recovery Model (CRM) took part in in-depth focus group meetings, of approximately 2.5 hours each, to generate feedback to guide improvement of the CRM and its use in mental health services.

Results: Consumers identified clear avenues for improvement for the CRM both specific to the model and broadly applicable to recovery-oriented service provision. Findings suggest consumers want to be more engaged and empowered in the use of the CRM from the outset.

Limitations: Improved sampling procedures may have led to the identification of additional dissatisfied consumers.

Conclusions: Collaboration with mental health consumers in the evaluation and improvement of recovery-oriented practice is crucial with an emphasis on rebuilding mental health services that are genuinely oriented to support recovery.

Introduction Research involving consumers in the evaluation of recovery-oriented practice appears rarely if at all in the literature (1). Despite the increasing emphasis on recov-

ery as a guiding vision for mental health service (2-4) few models of care have attempted to operationalize the principles of recovery into practice (5, 6).

The Collaborative Recovery Model (CRM) and associated training program for mental health staff is an example of an early attempt to convert a recovery vision for mental health services into specific principles and practices. This model was developed with a view to bringing together evidence-based practice and constructs consistent with the recovery movement to assist people with chronic and recurring mental disorders to work towards recovery in community mental health contexts (7). A definition of recovery consistent with this model involves “the establishment of a fulfilling and meaningful life and a positive sense of identity founded on hopefulness and self determination” (8, p. 588).

Development of the CRM and its related training program draws on existing evidence from the recovery literature, in particular concepts such as facilitating hope, supporting autonomy, and subjective goal ownership (7).

For example CRM training champions the individuality of the lived experience and ownership of the recovery process by the consumer, while recognising that other people, including mental health staff, can support individuals’ recovery processes. A key way in which this is enacted within the CRM is through a focus on authentic, approach oriented goals, collaboratively agreed upon by the consumer and staff. It is known that active goal setting focuses recovery and provides individuals with a sense of what is important and meaningful to strive towards in the future (9). The Collaborative Goal Technology (CGT) was specifically developed with this purpose in mind.

Using this tool, staff members are encouraged to assist consumers to identify a personal recovery vision, as well

Address for Correspondence: Sarah Marshall, PhD, Illawarra Institute for Mental Health, Building 22, University of Wollongong, Wollongong, New South Wales, 2522 Australia sarahmarshall600@hotmail.com

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as autonomous goals to support them in moving towards a fulfilling and meaningful life (10).

Specifically the CRM consists of two guiding principles: 1) recovery as an individual process and 2) collaboration and autonomy support. It also has four practical components: 1) change enhancement, 2) collaborative needs identification, 3) collaborative goal setting and striving, and 4) collaborative task striving and monitoring. These principles and components form the six training modules delivered to staff as part of the Collaborative Recovery Training Program. Initial training occurred within a two-day workshop, followed by two one-day booster sessions at 6 and 12 months following the initial training (11). There are four specific protocols for staff to follow, which require associated knowledge, skills and particular attitudes in order to work within a recovery orientation. The first skill is motivational enhancement (ME). This involves staff helping the person to identify advantages and disadvantages of specific behavior change in order to assist the person to activate his/her motivational resources to pursue desired life changes.

As part of the second protocol staff are encouraged to use the Camberwell Assessment of Need Short Appraisal Schedule (CANSAS) (12) as a precursor to goal setting. It is emphasized that unmet needs are a key source of motivation for individuals and that a negotiated approach to need is helpful. Thirdly, staff are taught to use the CGT (10) in a collaborative manner to assist consumers to elicit and document a meaningful recovery vision and a maximum of three measurable and manageable goals.

Finally staff members receive training in flexibly reviewing, designing and assigning tasks related to goals. This includes helping individuals identify and overcome obstacles that may hinder goal progress. See Oades et al.

(7) for further information related to staff training.

The CRM is an example of a model that creates the possibility for recovery-oriented practice in mental health services. However, this is not enough. There is a clear need to examine consumers’ perceptions regarding all aspects of the CRM, including how the model is experienced when working with staff in service settings (13). For example, from consumers’ perspectives is recovery progressing? How is it being supported? How is it being hindered? To what degree do staff members work consistently with this particular recovery oriented practice model? How can the CRM be improved to better support an individual’s recovery journey?

This study examined the experiences of consumers working with staff trained in the CRM, with a view to

obtaining practical recommendations for improvement of the model and its use and delivery in mental health services into the future. This is important in terms of recovery because, after all, recovery is the lived experience of the consumer. However, the consumer’s voice is not the only legitimate one. Mental health staff and family members’ viewpoints are also likely to be important within the context of a recovery oriented mental health system (9, 14).

Staff members’ views of the CRM have previously been examined, in addition to consumers’ in a related study (13). Family members’ views have not been examined but remain a worthwhile direction for future research.

An emphasis on service improvement in this study is consistent with contemporary conceptualizations of evaluation, such as formative evaluation (15). Some authors have suggested that consumers may place particular value on service improvement (16) which may be linked to their desire to assist others with mental illness (17). Focus group methods have been recognized as particularly beneficial when engaging participants in quality improvement and action based research (18, 19).

Method Participants

All consumers in this study were participants in a larger study, the Australian Integrated Mental Health Initiative High Support Stream (AIMhi HSS) project which involved the evaluation of the impact of the CRM on the recovery of adults with chronic and recurring mental disorders by way of a multisite study in four government and five non-government organizations within New South Wales, Queensland and Victoria, Australia. Research sites were randomly assigned to either an immediate CRM staff training or one-year delayed training condition. Inclusion criteria for consumers included a diagnosis of schizophrenia, schizoaffective disorder, bipolar disorder or Major Depressive Disorder with psychotic features of at least six-months duration and high support needs (identified as five or more total needs using the Camberwell Assessment of Need Short Appraisal Schedule). Individuals with dementia, severe mental retardation or brain injury were excluded (7). A total of 242 consumers and 114 staff agreed to participate in the AIMhi HSS project.

Eighteen consumers participated in this study from New South Wales and Queensland, Australia. Participants were attending a public mental health service in regional Queensland (N=4) or a regional or rural site of a nongovernment organization in New South Wales (N=7) or 199

Australian Mental Health Consumersâ&#x20AC;&#x2122; Contributions to the Evaluation and Improvement

Queensland (N=6), Australia. Eleven (61%) participants were female and seven (39%) were male. Participants had a mean age of 38 years (SD of 5.9 years), comparable to the larger sample of participants in the AIMhi HSS project (M=39.9, SD=12.5, at baseline).

Diagnostic information was collected from clinicians indicating that 50% of the sample met the diagnostic criteria for schizophrenia (n=9), 22.2% schizoaffective disorder (n=4), 22.2% depressive psychosis (n=4), and 5.6% bipolar disorder (n=1). Three participants were identified and agreed to take part in focus groups, with a particular focus on their critique of the CRM, or their experience of this model as received in services.

Procedure Structured focus group protocols were developed including a protocol for group facilitators outlining key areas to discuss with focus group participants and power-point slides to support and complement the verbal presentation/discussion. Participants also received a one-page handout summarizing key findings from two earlier studies undertaken with consumers evaluating the CRM and a CRM diagram for reference during meetings. Focus group protocols were distributed to four consumer researchers for review and comment.

Feedback offered guided further refinements.

Focus groups commenced with a brief overview of the CRM and an emphasis on topics covered during staff training. Facilitators also briefly described to group members relevant issues regarding limited exposure to practical components within the context of the AIMhi HSS (i.e., statistics regarding what people actually received in practice with a focus on practical components). Facilitators then raised relevant findings for discussion with a focus on unhelpful aspects, areas of concern and suggestions for improved practices. The starting point for this discussion was drawn from key findings from two earlier studies. This included a brief questionnaire administered to 92 consumers, as well as 22 in-depth interviews undertaken with consumers taking part in the AIMhi HSS. Participants were therefore encouraged to reflect on other consumersâ&#x20AC;&#x2122; experiences of the CRM, as well as offering their own experiences of working with CRM trained staff.

Participants were provided with detailed information about this study and were required to sign formal consent, as approved by the relevant ethics boards. Focus group meetings were held in July and August 2007. The first meeting was held in Queensland, Australia and was 200

attended by seven consumers. The second group was held in New South Wales, Australia and was attended by 11 people. Group meetings ran for approximately 2.5 hours including a 30-minute refreshment break. Two paid consumer researchers co-facilitated each focus group meeting in collaboration with the primary researcher. All consumer researchers employed as co-facilitators had existing experience in relation to research activities and prior exposure to the CRM. All co-facilitators attended a training session.

Design and Analysis Maximum variation sampling was employed in this study.

A key selection criterion was to recruit people who were critical of the CRM, or certain aspects of it. Clinicians and research assistants working within the various organizations nominated people they believed met these selection criteria. There was an effort to target people who had ceased their involvement in the AIMhi HSS project and, where possible, clarifying reasons for their departure. This involved staff speaking directly to consumers they had been working with to clarify more about their experiences and to ascertain whether they were willing to be interviewed. An advertisement was also placed in the CRM newsletter, which was posted to all consumers participating in the AIMhi HSS project. There was also an attempt to balance gender and age of participants. An additional focus was on recruiting people from both public mental health services and non-government organizations in different states of Australia and across the range of diagnoses participating in the larger project.

Focus groups were audiotaped and transcribed verbatim. Thematic analysis was undertaken and key themes obtained from focus group data were identified using the following steps: 1) Familiarity with the focus group data was obtained by reading and re-reading transcripts several times; 2) Focus group transcripts were reviewed in turn and group membersâ&#x20AC;&#x2122; responses to the areas outlined in the focus group schedule were located within the transcripts. These themes were summarized for ease of reference. Example quotes were also located and included; 3) Transcripts were checked for other relevant information that fell outside the areas for discussion identified on the focus group schedule, but remained relevant for the improvement of the CRM and associated staff training; and 4) Summaries for the two focus groups were then cross-referenced to compare whether findings were similar for meetings held in New South Wales and Queensland, Australia.

Sarah L. Marshall et al.

Results Findings and recommendations

A summary of key findings from focus groups is available in Table 1. This table identifies seven key concerns identified by consumers, examples of relevant quotes, possible avenues for improvement and an overview of broader implications for recovery oriented practice and mental health service delivery. Concerns and recommendations are discussed further below and hold relevance not only for improvement of the CRM, but in many instances have broader applicability to recovery-oriented practice. For example, goal striving and homework are practical activities, which may already be utilized by mental health staff.

This study highlights some consumers’ concerns around these practices, which may help inform the way in which staff can more effectively engage in such activities with consumers in the future.

1. Equivalent CRM training should be developed for consumers

There was a perception among some consumers that the CRM was not presented to consumers in an appropriate manner that maximized its appeal. A number of people spoke about the emphasis on paperwork and the sense that the model was something that they had to do. One suggested avenue for improvement was to introduce consumers to the CRM within a peer-group setting.

Presently the standard CRM two-day initial training package and booster sessions mentioned above are available for mental health staff. An equivalent training program should be offered to consumers. Mental health consumers should ideally facilitate training. This may assist in enhancing consumer ownership and responsibility at the outset.

2. Improved emphasis should be placed on accurately conveying the message of recovery to consumers. For example by way of improved staff training and/or a peerrun group setting to facilitate increased awareness of ideas regarding recovery

Some participants raised their concern that mental health staff had spent an inadequate amount of time, if at all, discussing and orienting them to the concept of recovery.

In addition a number of consumers participating in interviews as well as focus groups expressed confusion with the term recovery. For example, one person said that the word recovery was “foreign” to him, stating, “I’ve heard the word recovery before, but what it actually means or is supposed to be I didn’t know” (participant, NSW group).

Such findings are of concern, as at least for some consumers it appears that the message of the possibility of recovery and conceptual understanding of this concept was not being clearly conveyed by staff.

One avenue for improvement was to introduce consumers to recovery within a peer-led group setting when commencing with the model. Possible benefits could include ensuring that consumers are oriented to and familiar with recovery from the outset, as well as creating an opportunity for sharing ideas among consumers with respect to their recovery journey (9, 20). It would be important to ensure that meetings were facilitated by a consumer with lived experience of recovery who was sufficiently knowledgeable in relation to recovery and could ensure that people were adequately informed from the outset.

Moving beyond the CRM, these findings demonstrate the importance of ensuring that recovery oriented mental health organizations equip staff with sufficient training to acquire a thorough understanding of recovery. Further to this staff need to demonstrate an ability to clearly convey the message of recovery to people with mental illness, with whom they work. Peer role-models are also likely to play a very important role in facilitating the message of recovery.

3. Additional interventions should be developed and offered to address difficulties regarding transfer of training of CRM into practice in mental health services

Some focus group participants discussed clinicians’ negative attitudes towards the CRM, in particular written documentation or “paper work” requirements for goal and homework sheets. These perceived negative attitudes in turn influenced consumers’ perceptions of these practical aspects. One person said, “if they are kicking and screaming we’re not going to turn around and say, well hold on a second that is a good idea”(participant, QLD group). Another consumer raised concern that perceived pressure placed on staff to complete written documentation in some instances flowed through to the consumer. A related concern echoed by several participants was their belief that staff might not have been receiving adequate ongoing support, following their initial training in the CRM. Future changes to staff training and support procedures should be undertaken in consultation with service providers and should include exploration of key barriers to implementing the CRM in practice settings, as perceived by staff.

Key barriers identified by staff participating in the AIMhi HSS study were perceived to be “institutional constraints” 201

Australian Mental Health Consumers’ Contributions to the Evaluation and Improvement

Table 1. Summary of unhelpful areas and suggestions for improvement as identified by consumers Summary of “unhelpful” area or concern

Example of relevant consumer quotes

Broader implications for recovery-oriented Possible directions for improvement practice/service delivery

1. CRM not presented to consumers in an appealing manner from the outset

“You present it to the consumers first… we all get together and get excited about it and then the support worker comes along…the way I received it is that she landed on my doorstep with these big fat books and just basically said this is the way we have to do it” (participant, QLD group)

1. Introduce and orient consumers to the CRM within a peer-group setting 2. Develop equivalent CRM training for consumers on commencement in the program (presently CRM training offered to staff only). Mental health consumers should facilitate training

Initial training in recovery-oriented practice should be offered to both consumers and mental health staff. This is likely to assist in empowering consumers from the outset and encouraging development of more equal and collaborative working relationships

2. Some mental health staff’s inadequate discussion with consumers around recovery

“It was a bit like the birds and the bees scenario (reflecting on staff discussion of recovery)…I got the talk but it wasn’t a warm and friendly discussion around who you might marry or whatever, it was just the talk” (participant, QLD group)

1. Introduce consumers to recovery within a peer led group setting on commencement with model (overlap with point 1 above) 2. During staff training emphasis on sharing and discussing concept of recovery with consumers/various avenues to convey this message, e.g., consumer stories/videos

Knowledge of “recovery” should not be assumed for staff or consumers. This area should be explicitly emphasized during recoveryoriented training. Staff should be afforded with opportunities to practice conveying the message of recovery to consumers using various mediums

3. Perception that some staff had negative attitudes towards the CRM (in particular completion of goal and homework sheets) and felt unsupported

“If a support worker makes you understand they don’t agree with the paperwork you’re going to go oh good, I’ll get out of this, because they don’t want to do it anyway. So maybe that is something in your training that has to be changed” (participant, NSW group)

1. Improve ongoing training and support procedures offered to staff beyond the 2-day initial training and 1-day booster sessions

Employment of multiple strategies may support improved dissemination of recovery-oriented practice in service settings, e.g., support of management and team leaders, linking of research with the “mission” of organizations and workplace coaching

4. Existing format of goal and homework sheets may place too much emphasis on written documentation for some people

“I hate reading. I just usually go through it and write down whatever and ignore it…I find that annoying too much reading” (participant, NSW group) “You wanted to get your own place or something just cut a picture from the newspaper of a house that you love…I know it’s a method but I don’t think people use it enough” (participant, QLD group)

1. During CRM training emphasize alternate methods to written documentation when communicating goals and homework 2. During redesign of goal and homework sheets into a personalized diary/book encourage alternate expression such as by way of illustration/collage/photography

Staff assisting consumers to set goals in line with their preferred life directions should encourage various means of communication, beyond traditional written expression. For example use of photography, drawing, collage as preferred by the individual

5. Perception that goal and homework sheets owned by mental health staff, as opposed to consumers

“When you do something that’s your own… your own diary or your own journal it’s very different then if you do something like that (goal and homework sheets) which looks so official” (participant, QLD group) “I think you should have your own book and keep it yourself” (participant, QLD group)

1. Development of a consumer owned personalized book/diary to document goals and homework and relevant aspects of recovery journey

Goal setting tools and homework should be designed into a format where consumers are encouraged to take personal ownership over such documents. Individual sheets distributed by staff are not preferred. A possible alternative includes a journal/book that is owned and personalized by consumers.

Consideration of staff reporting requirements is important but should not be the main factor guiding design decisions

6. Difficulty regarding goal striving during periods of illness

“I don’t think it’s actually important to have a goal when you’re unwell because that can actually make you more unstable…well I believe that you should be working on it, but not so much” (participant, NSW group)

1. Staff should discuss exacerbation of mental illness as one possible barrier to goal striving and negotiate an individual plan as how to proceed, in the event this occurs 2. The area outlined above should be discussed with staff during CRM training

Staff working with consumers to set life goals should consider discussing an exacerbation of symptoms as one possible barrier to goal striving. A personal approach regarding how to proceed in the event that this occurs can be negotiated where appropriate. This may help allay some consumers concerns in this area

7. The use of word “homework” and “recovery vision” viewed as inappropriate for some consumers

“You’re an adult, it’s really offensive for someone to tell an adult to do their homework” (participant, QLD group) Homework, it’s actually something I have to do but I don’t want to do it…like you’re back at school again” (participant, NSW group)

1.The words “homework” and “recovery vision” may not be preferred by some consumers.

Staff should discuss a personally appropriate and meaningful term.

Staff should be aware of their use of clinical language and possible impact on individual consumers. For example some persons may consider the terms “homework” and “recovery vision” inappropriate. Alternative personally meaningful terms should be identified where relevant. For example possible suggested alternatives include mini goal, task (when referring to homework) and life vision, life direction (when referring to recovery vision)

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and “client unresponsiveness to the intervention” (21).

Possible changes to support dissemination of research protocols into practice in service settings include: support of management and team leaders, so they better understand, effectively communicate and lead recovery-focused change among their staff (22) and better linking of research practices with the “mission” of organizations. Other suggestions include better integration of the new ideology and protocols, regular monitoring of progress, workplace coaching, additional staff incentives (21) and audit and feedback (23). Also worthy of consideration are interventions that target the external attributions of staff to encourage them to take responsibility for transferring research protocols into practice (21). For example clinicians’ perceptions regarding “client unresponsiveness to the intervention” may in part reflect pre-existing attitudes held by individual clinicians, as opposed to external factors. In summary the importance of multifaceted interventions, which include a combination of methods, when encouraging uptake of recovery-oriented practice in services is highlighted (23).

4. Consumers should be encouraged and provided with options to express their goals and recovery visions using alternate mediums such as drawings, photographs and pictures as desired

Some consumers expressed concern that goal and homework sheets placed a heavy emphasis on a written format, identified as an unfavorable means of communication for some people. For example, it was suggested that the existing format might be inappropriate for people with reading or writing difficulties and/or for people who had preferences for other forms of communication such as in the visual, rather than verbal domains. This should be considered during redesign of goals and homework into a book format (see point 5). Staff should be encouraged to consider and discuss alternate methods of communicating goals and homework with consumers (such as through illustration, collage or photography).

This finding has broader relevance to mental health staff outside of the CRM program. Goal setting is a common practice in case management and mental health rehabilitation settings (24). Furthermore, goal setting is known to be a key factor in supporting recovery, providing a source of hope and meaning for individuals’ recovery journeys (8).

5. Goal and homework sheets should be incorporated together into a book-type format that is owned and can be personalized by mental health consumers

Concerns were raised by some consumers regarding

the perceived ownership of goal and homework sheets/ books by case managers, as opposed to consumers. The current format for the CRM (separate books containing goal and homework sheets kept by staff, with single sheets provided to consumers on completion) does not seem to support consumer ownership or responsibility over this process.

A recommended way of addressing this concern offered and supported by group participants was to have a book or diary that was owned, kept and written in by the consumer where they could record their goals, homework and other relevant information. One consumer when describing the benefits of a “book” format said, “just by writing your goals down and reflecting on them in your own words it’s healing because you gain that sense of autonomy back” (participant, QLD group).

Other group members supported this perspective, for example describing such a format as “empowering.”

This finding has broader relevance to mental health staff assisting consumers with goal setting and homework activities within the context of supporting their recovery. Consideration should be given to enhancing consumer ownership and responsibility not only at the process level when engaging in goal and homework activities (for example in setting and reviewing these activities), but also at a more practical level in terms of any tools/forms used and how and where this information is documented and kept.

6. Staff should discuss exacerbation of mental illness as one possible barrier to goal striving and negotiate an individual plan on how to proceed, in the event that this occurs. This may assist in empowering consumers and help allay possible concerns

Findings indicated that some consumers, not surprisingly, experienced difficulty regarding goal striving during periods of illness. Discussion of people’s responses to this scenario while not extensive, indicate that the most appropriate approach may be best negotiated at an individual level. For example, some people expressed a preference to continue talking about their goals with staff members even during periods of illness, or to continue working towards their goals, to a lesser degree. Other people felt that during periods of illness it might be most appropriate to take a break from goal striving and for staff to provide guidance around returning to goal striving when the consumer indicated that they were ready.

This finding is likely to be of relevance to other staff supporting individuals with their goals. Goal attainment 203

Australian Mental Health Consumers’ Contributions to the Evaluation and Improvement

is related to consumers’ level of symptom distress. For example when symptoms are less distressing, consumers are better able to make progress towards their goals (24). Therefore the severity of illness and symptomology would likely influence consumer and staff decisions relevant to this aspect. It is recommended that staff discuss the possibility of becoming unwell with consumers as one possible barrier to goal striving. This may help allay concerns, in particular if an individualized plan is discussed as to how consumers would prefer to proceed in the event of becoming unwell or experiencing an exacerbation of their symptoms.

7. Some consumers may view the terms “homework” and “recovery vision” as inappropriate. Staff should assist individuals to identify language that is personally meaningful/appropriate

Consumers’ concerns with the term homework appeared to focus on issues to do with perceived lack of choice and paternalism implied by the use of this term. Consumers taking part in focus group meetings used words such as “disgusting,” “offensive” and “condescending,” when discussing use of the term. For some participants the term conjured up strong negative associations with experiences at school, where they were told to do something, as opposed to being involved in this process. Consumers suggested a range of alternate terms that could potentially replace the term homework such as goal work, goal tasks, short-term goal and mini goal.

Findings from interviews and focus groups also indicated that some participants had concerns with the use of the term “recovery vision” (used within the context of the CGT). During interviews three people used the term “life vision,” as opposed to the term “recovery vision” when discussing this aspect of the CGT. The term “life vision” appears more consistent with the everyday language used by consumers. It may also assist in shifting consumers to focus beyond their illness, to their broader life goals and visions.

The use of the term “life” within this context is also likely to be more consistent with language used by the general population when discussing their goals and future directions. Staff engaging in discussions with consumers around their larger life directions would benefit from identifying a term appropriate to the individual. For example, terms such as “life vision,” “life direction,” “life dreams,” “valued direction,” or whatever provides most meaning for the person.

These findings have broader relevance in terms of encouraging mental health staff to be aware of and to critically reflect on their own use of language, within a 204

recovery context. In particular it is recommended that the term “homework” be used with caution and that personally appropriate and meaningful terms be identified in collaboration with individuals.

Limitations A limitation of this study was the purposive sampling strategy employed when attempting to identify consumers with “unhelpful experiences” with respect to the CRM. Some participants in the AIMhi HSS study ceased involvement, or “dropped out” in the early stages of commencement in the project. While procedures were put in place retrospectively to examine “drop out” lists, establish reasons for leaving the project (where available) and to contact the person to enquire as to their experiences with the model, this was not always possible. Ideally a procedure would have been implemented to follow up participants as soon as they “dropped out” of the AIMhi HSS to investigate their experiences of the CRM (and where appropriate to invite them to take part in focus groups). Improved processes may have led to identification of additional dissatisfied consumers.

Furthermore other consumers may have remained dissatisfied with the CRM but may have not been comfortable sharing their experiences. It is entirely possible that findings may not be representative of all consumers from the AIMhi HSS project who were dissatisfied with the model.

The nature of this study, with an emphasis on purposive sampling meant that relatively small numbers of consumers participated (n=18 from a total sample of 242 consumers participating in the AIMhi HSS project). This limitation was addressed somewhat within the context of a related study where larger numbers of consumers (n=92) provided feedback on their valuation of practices consistent with the CRM by way of a brief structured questionnaire. Findings indicated that the vast majority of consumers tended to rate all aspects of the CRM as important in terms of assisting their recovery (13). In addition interviews were conducted with 22 consumers from the AIMhi HSS project, the results of which informed the protocol for this study (25). Hence, this study should be considered within the context of these two related studies, which helped inform the protocol for focus group meetings.

A further limitation of this research is that appropriateness of consumer recommendations ideally would have been discussed in direct collaboration with other relevant stakeholders including mental health staff and management.

Sarah L. Marshall et al.

While consumer researchers were involved in this research to some degree (including the review of focus group protocols and as co-facilitators of focus group meetings), some limitations existed in terms of available time and resources. Ideally collaboration with consumers would have occurred extensively at each level of the research process. Evaluation models aligned with collaborative approaches to evaluation may provide guidance for future research in this area such as participatory action research, empowerment evaluation (26) and user focused monitoring (27).

Conclusions Findings from this study indicate that consumers wanted to be more empowered and involved in the use of the CRM from the outset. For example through an equivalent training/introductory session, a peer led group to introduce and share experiences of recovery and use of a handheld diary to record goal striving to be personalized and owned by consumers. Such directions around empowering consumers to take more ownership and responsibility for usage of the model and hence their own recovery, may also hold promise for addressing difficulties regarding transfer of the CRM from theory into practice within mental health service. Genuine collaboration between consumers and researchers in the evaluation and improvement of recovery oriented practice is likely to assist in moving beyond rhetoric, to developing services that truly support individual recovery journeys.

Acknowledgements:

This article was part of the Australian Integrated Mental Health InitiativeHigh Support Stream Project, which was supported by Strategic Partnership Grant 219327 from the National Health and Medical Research Council. The Schizophrenia Fellowship of New South Wales and Queensland provided financial support for payment of consumer researchers involved in this study.

The protocol of this study has been approved by the Ethics Committees at the relevant universities and conforms to the provisions of the Declaration of Helsinki. All authors contributed to all stages of this study including a) conception and design, or analysis and interpretation of data, b) drafting or critical revision and c) final approval.

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Epidemiol Psychiatr Soc 2008; 17:128-137.

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development of Recovery Facilitating System Performance Indicators.

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7. Oades LG, Deane FP, Crowe TP, Lambert WG, Lloyd C, Kavanagh D. Collaborative Recovery: An integrative model for working with individuals that experience chronic or recurring mental illness.

Australas Psychiatry 2005; 13: 279-284.

8. Andresen R, Oades L, Caputi P. The experience of recovery from schizophrenia: Towards an empirically validated stage model. Aust NZ J Psychiatry 2003; 37: 586-594.

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11. Crowe PT, Deane FP, Oades LG, Caputi P, Morland KG. Effectiveness of a collaborative recovery training program in Australia in promoting positive views about recovery. Psychiatr Serv 2006; 57: 1497-1500.

12. Andresen R, Caputi P, Oades LG. Interrater reliability of the Camberwell assessment of need short appraisal schedule. Aust NZ J Psychiatry 2000; 35: 856-861.

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14. Fisher DB, Chamberlain J. Consumer-directed transformation to a recovery-based mental health system. Massachusetts: National Empowerment Center, 2004.

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Isr J Psychiatry Relat Sci - Vol 47 - No.3 (2010)

Measuring Recovery in Mental Health Services Mike Slade, PhD, PsychD Reader in Health Services Research, Health Service and Population Research Department, Institute of Psychiatry, King’s College London, U.K.

ABSTRACT An international policy goal is to orientate mental health services around the support of “recovery”: the development of new meaning and purpose in one’s life, irrespective of the presence or absence of symptoms of mental illness. Current progress towards a recovery orientation in mental health services is summarized, indicating that pro-recovery policy is in advance of both scientific evidence and clinical practice. Key evaluation challenges are outlined, and indicators of a recovery focus are described. These include quality standards, consumer-clinician interaction styles, and belief and discourse markers. This underpins a proposal for a new approach to service evaluation, which combines attainment of objectively-valued social roles and of subjective-valued personal goals. This approach has applicability as a methodology both for clinical trials and routine practice.

Introduction In this article we discuss evaluation of recovery in mental health services. We start by describing what is meant by recovery, and characterizing international progress.

We then identify current tools, and make proposals for future research strategies. Finally, we make a specific proposal for an evaluation strategy for use in mental health services, and explore the research and clinical implications.

What is recovery?

The experience of mental illness from the inside has become increasingly visible in the past few decades (1). Individuals describe what their life is like with Address for Correspondence: m.slade@iop.kcl.ac.uk

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the mental illness, and what helps in moving beyond the role of a patient with mental illness (2). Building on these ecologically valid accounts, there has been a recent transition towards synthesizing these individual accounts to identify group-level processes and components of recovery (3, 4). One understanding of recovery which has emerged from these accounts emphasizes the centrality of hope, identity, meaning and personal responsibility (5). We will refer to this understanding of recovery as personal recovery, to reflect its individually defined and experienced nature (6).

The most widely used definition of personal recovery in international policy in the English-speaking world comes from Bill Anthony: 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 within the limitations caused by illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness (7). This understanding of recovery contrasts with traditional clinical imperatives – which we will refer to as clinical recovery – which emphasize the invariant importance of symptomatology, social functioning, relapse prevention and risk management. Personal recovery and clinical recovery are different (8). Personal recovery is commonly understood as a process, can best be judged by the individual service user, for some people does not involve symptom reduction, and may not be due to the actions of mental health services. Clinical recovery is commonly understood as an outcome, is a judgement by an observer, and places great emphasis on symptom reduction and effective treatments by mental health services. To note, this distinction has been referred to by other writers as recovery “from” versus recovery “in” (9); clinical recovery versus social recovery (10); scientific versus consumer models of recovery (11); and service-based recovery versus user-based recovery (12). What is common across these different defini-

Dr. Mike Slade, HSPRD (Box P029), Institute of Psychiatry, Denmark Hill, London SE5 8AF, U.K.

Mike Slade

tions is a re-orientation from patient to personhood, a re-orientation of valued knowledge and expertise, and partnership and negotiations in decision-making (13).

Personal recovery is the focus of this article.

Progress towards personal recovery We now briefly review the extent to which mental health services internationally are oriented towards personal recovery, using as an organizing framework three proposed levels for characterizing the mental health system: the country / regional level; the local level; and the person level (14).

At the country / regional level, personal recovery is the guiding vision for mental health policy throughout the English-speaking world. Supporting recovery is a central aim of mental health policy in the U.S.A., Canada, New Zealand, Australia, Ireland, Scotland and England and Wales. In addition, it is developing as an influence on policy in the German-speaking world (15), and the relevance of recovery ideas in Israel are now being considered (16). There has been a parallel development of interest in personal recovery by the profession of psychiatry (17, 18), and in England also by other professional groups such as occupational therapists (19) and mental health nurses (20).

At the local level, there has been much less progress towards a recovery orientation in how mental health services are actually delivered (21). Several blocks to developing a recovery orientation can be identified (22).

For example, there is a sociopolitical expectation that the mental health system will prevent tragedies, especially homicides. This expectation is widespread, even though the linkage of mental illness and violence is not empirically justified (23). The resulting risk management climate defines risk as something to be avoided, rather than necessary for personal growth. This leads to recovery-hindering practices which place â&#x20AC;&#x153;people in a protective bubble, shielding them from their community and ultimately from their futureâ&#x20AC;? (24). Positive risk-taking in the context of supportive professional relationships is possible and more supportive of recovery than a focus on risk avoidance (25). However, the implementation block we will focus on relates to research. There is a clear need for high-quality evaluative research which investigates the impact of a recovery orientation at a local level (26).

At the person level, the central message to emerge from qualitative syntheses of recovery narratives is that recovery is individual. Opinions in the consumer

literature about recovery are wide-ranging, and cannot be uniformly characterized. This multiplicity of perspectives in itself presents a challenge for mental health services â&#x20AC;&#x201C; no one approach works for everyone.

There is great variation within and between individuals (27). Within individuals, what promotes recovery at one time in their life (such as active involvement from mental health services) may hinder recovery at another. Between individuals, there is great variation in pathways to recovery, with many finding that they experience recovery despite rather than because of mental health services (3, 12, 28). If mental health services are to be focussed on promoting personal recovery, then this means there cannot be a single recovery model for services. This is a profound point, and challenging to current professional concepts of clinical guidelines, evidence-based practice and care pathways. This will involve mental health services working in new ways, for example to avoid reinstitutionalization pressures (29) and reduce in-system stigma (30). Guides for mental health professionals are starting to become available (31) [downloadable for free from rethink.org/100ways].

Recognizing a focus on personal recovery How can we recognize a recovery focus in mental health services, and how should the effectiveness of mental health services be evaluated?

Quality standards for a recovery-focussed mental health service are beginning to emerge. For example, the Pillars of Recovery Service Audit Tool (PoRSAT) identifies six pillars of service development: Leadership, Person centred and empowering care, Hope inspiring relationships, Access and inclusion, Education, and Research / Evaluation (32). The Practice Guidelines for Recovery-Oriented Behavioral Health Care cover eight domains: primacy of participation; promoting access and engagement; ensuring continuity of care; employing strengths-based assessment, offering individualized recovery planning; functioning as a recovery guide; community mapping, development and inclusion; and identifying and addressing barriers to recovery (33, 34).

Finally, the Recovery Promotion Fidelity Scale assesses organization performance in six domains: Participation and acceptance; Self-determination and peer support; Collaboration; Quality improvement; Staff development; and Miscellaneous (35). At present, these standards are not widely used. Possible explanations might 207

Measuring Recovery in Mental Health Services

include that a recovery orientation is viewed as an optional extra or a passing fad rather than a permanent and central activity, or that there is a general negative attitude towards any process measurement.

Despite these developments, there is as yet no consensus on an accreditation process to identify a recovery focus in services. This is unfortunate, because it allows any service to incorporate the term recovery into its name, irrespective of its actual approach. In the future it will be of benefit when an accreditation process emerges, although this will be challenging: needing to consider staff values, engagement with community services, process issues such as hope promotion, and so forth. Challenging but not impossible, as shown by the Fidelity Assessment Common Ingredients Tool (FACIT) measure of fidelity for consumer operated services, which assesses program structure, environment, belief systems, peer support, education and advocacy (36).

Given the centrality of relationships in supporting recovery (6), an alternative to assessing service-level characteristics is to focus on what happens in the consumer-clinician relationship. The Recovery-Promoting Relationships Scale is a 24-item consumer-rated measure about their experience of the relationship with their provider (37). It includes items such as My provider helps me recognize my strengths, My provider helps me find meaning in living with a psychiatric condition, My provider encourages me to take chances and try things, My provider sees me as a person and not just a diagnosis, and My provider believes in me. The unpublished Elements of a Recovery Facilitating System (ERFS) measure from the Yale Program for Recovery and Community Health assesses the extent to which the mental health system supports the individual in their recovery journey, and includes items such as Staff seem to hold hope for me, I have a say on how programs are run, and Role models I can learn from work in the program. Finally, the Sainsbury Centre for Mental Health in England published “10 Top Tips” that identify aspects for workers to reflect on following each interaction with service users, including items such as Did I help the person identify and prioritize their personal goals for recovery – not professional goals? and Did I identify examples from my own “lived experience,” or that of other service users, which inspires and validates their hopes? (38).

In the absence of universal quality standards, it is helpful to identify domains which merit future consideration. We now consider two candidate domains: belief markers and discourse markers. For each domain, we 208

propose some (un-evaluated) litmus tests which might indicate a focus on personal recovery.

Belief markers Some beliefs in traditional and personal recovery focussed services are compared in Table 1.

Table 1. Beliefs in two types of mental health service Beliefs in traditional mental health services

Beliefs in recovery-focussed mental health services

We already “do” recovery

Recovery is a journey not a destination, and we are on the way, but have a long way to go

Recovery begins with recognizing you have a mental illness

Recovery begins by reclaiming a sense of who you are

My job is to diagnose or formulate, then provide treatments or interventions for mental illness

My job is to support the person in their journey towards a more meaningful and enjoyable life

My primary approach to relating to consumers is as an expert

My primary approach to relating to consumers is as a coach or a mentor

I have a duty to intervene

I have some must-dos, but I employ several approaches to avoid my agendas dominating our work together

I decide when compulsory treatment is necessary

Approaches such as Advance Directives minimise the extent to which I decide when compulsion is necessary

Staff and consumers are fundamentally different – they have a mental illness, we do not

Staff and consumers are fundamentally similar – we are all trying to live a meaningful and enjoyable life

It is better not to be open if I have my own experience of mental health problems

Being open with other staff and clients about my own strengths and vulnerabilities is a positive asset

A recovery-focussed service has a balanced view about the impact of clinical practice. It recognizes that many consumers benefit from the traditional practices and values of mental health services. The problem is that not all consumers benefit, and some are harmed. So the orientation of the service is towards doing better over time.

This creates a learning organization culture, in which performance information is highly valued, and the twin characteristics of ambition and modesty are present.

Other beliefs become evident in behavior. For example, if the consumer needs to “game” to get their needs met (e.g., becoming abstinent before getting housing, or reporting no voices before being discharged), this may be because of unstated clinical assumptions that treatment

Mike Slade

Table 2. Discourse markers of a recovery-focussed mental health services Clinical term

Problem

Potential alternative

Case management

People are more than a case (of schizophrenia, depression etc.)

Recovery support

Case presentation

This creates an expectation that what needs presenting, and therefore what matters, is the illness part

Recovery presentation

Has a diagnosis of…

When used without any qualification this becomes reified – seen as a true thing instead of a professional construction

Meets criteria for a diagnosis of…

Patient / consumer / peer, etc.

Puts the person and their experiences into a socially-defined category, instead of encouraging self-definition

Ask the person how they want to be referred to

Treatment-resistant

Locates the reason for not benefiting as in the person AND pejorative AND normally a misleading synonym for medication-resistant

Not benefiting from our work with him/her

The treatment aims are…

Treatment should be secondary to recovery goals, rather than an end in itself

The recovery processes being supported are…

Maintaining boundaries

Has implications of a fortress mentality, and needing to defend against harm from “the other”

Creating sustainable relationships

Introducing as “I am Dr. Smith”

Positions the professional as high social status and imposes a clinical frame of reference which constrains the resulting discourse

“Please call me Sam or Dr. Smith, as you prefer”

Maintenance, stabilization

Expecting no improvement is self-fulfilling AND pejorative

Consolidating gains

Risk management

Views all risks as to be avoided, so does not encourage personal growth

Harmful risk and positive risk-taking

needs to come before other types of help or support, or that illness-related needs should be met before meeting non-illness needs. The overarching behavioral marker is whether the person is treated as the professional would like to be treated. Housing provides an example. Some professionals would love to live with a group of other people from the same profession, and others would hate it. Few would be pleased if their request for housing was responded to with a requirement that they go on a course to learn to be a good tenant!

We turn now to the language of recovery.

Discourse markers There is no right way of talking about recovery.

Language is constantly evolving, so any linguistic symbol (i.e., a word or phrase) attracts unintended meanings over time. For example, in New Zealand the term “peer” is used for people who self-identify as having used mental health services, since the term “service user” is seen by some as having negative connotations of being a ravenous consumer of resources. Similarly the term resilience is preferred to recovery by younger people, because it has fewer associations with illness.

To some extent, therefore, the language used is irrelevant. What matters is the core values, rather than the words an individual professional uses (which are influenced by profession, education, context, etc.). However, since language shapes how we see and construct the

world, it is important to consider how to language recovery, i.e., to use shorthands which foster rather than inhibit the recovery journey. Some general principles can be identified. For example, person-first language is helpful – talking about the person experiencing psychosis or the person with schizophrenia (or, even better, the person with a diagnosis of schizophrenia) rather than the schizophrenic or the schizophrenic patient serves to remind that diagnoses classify illnesses, not people (39). Similarly, the avoidance of illness-saturated linguistic environments – in which the only visible part of the person is the mental illness part – is important, so language to describe strengths and aspirations is a necessary counter-balance to discourse around deficits and disabilities. In Table 2 some traditional clinical terms and more recovery-promoting alternatives are put forward. Because there is no single best language, the intention is not to identify right and wrong ways of talking. Rather, the aim is to make visible some embedded assumptions and to suggest one of many approaches to languaging recovery.

Other discourse markers which are harder to specify in concrete terms are being open to discussion of power and choice (and its limits), and having a meaningful concept in regular use of expert-by-experience.

Evaluating success Assessing the outcome of mental health service is vital, for both external and internal reasons. Externally, the 209

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spending of tax-payer’s money on mental health services rather than other demands can only be sustained long-term if there is evidence of value-for-money, and outcome evaluation provides the data about the benefits. Internally, a learning organization requires regular feedback on its performance. How can we evaluate the impact of a mental health service in ways which promote a focus on recovery? This challenge of acknowledging individual difference whilst using aggregated data is not new (40). The difficulty is summarized by Repper and Perkins: “Traditional yardsticks of success – the alleviation of symptoms and discharge from services – are replaced by questions about whether people are able to do the things that give their lives meaning and purpose, irrespective of whether their problems continue and whether or not they continue to need help and support” (41).

The challenge is to measure outcome in a way which is both aggregable and meaningful. Outcome data needs to be aggregated across individuals in order to meet many of the information needs of modern society – at the team, service, program, region and national planning levels. The problem from the consumer perspective with aggregation is loss of meaning (or granularity as epidemiologists would put it). Collecting information primarily for aggregation purposes leads to a focus on quantitative rather than qualitative data and on average rather than individual ratings. Both of these features are experienced by many consumers as unhelpfully reductionist and associated with loss of individual identity.

How can outcome be evaluated, whether in scientific investigation or routine clinical practice, in a way which is sensitive both to the idiosyncratic nature of recovery and the need to aggregate data? There are country-specific issues, and for example the challenges of assessing Psychiatric Rehabilitation Services in Israel have been outlined (42). But there are also general principles. Outcome evaluation should be based on a theoretical framework, and should measure what matters (43). One embedded issue is of course to whom the outcome matters, and a personal recovery orientation give primacy to outcomes which matter to the individual. The Personal Recovery Framework provides a defensible theoretical framework (6, 44). It identifies two classes of outcome which matter (i.e., promote personal recovery): valued social roles which reinforce social identity, and individual goals which contribute to personal identity. Both classes of outcome have features which are relevant for outcome assessment.

Valued social roles include employee, partner, family member, friend, citizen, free (i.e., non-detained) per210

son, etc. Their value is relatively invariant – most (but of course not all) people want a job, a relationship, contact with their family, some close friends, the ability to exercise citizenship rights such as voting, not to be held in hospital or prison, etc. Assessment tends to be quantitative and dichotomous (or at least on an ordinal scale, such as unemployed – voluntary work – part-time work – full-time work), and hence easy to aggregate with little loss of meaning. They can be measured using objective quality of life indicators. For example, the MHA Village (mhala.org) uses ten observable outcome indicators, including Live in the most independent, least restrictive housing feasible in the local community, Self-manage their illness and exert as much control as possible over both the day-to-day and long-term decisions which affect their lives, and Reduce or eliminate the distress caused by their symptoms of mental illness.

The primary advantage of this kind of outcome is that they are based on normal social values, and so avoid illness-related lowering of expectations (either by staff in an effort to be realistic or by patients with internalized stigmatizing beliefs about what they can expect in life). Since most valued social roles occur outside the mental health system, they orientate the actions of the service towards increasing integration and participation by the person into their social environment, rather than encouraging a decontextualized and service-focussed view of the person. Their primary disadvantage is their invariance – some people get along very well in life without friends, or a partner, or a job. Attempting to impose normal social roles has the potential to be oppressive. However, assessing outcome is intrinsically value-based. It is less oppressive to be concordant with a value of personhood – the person with mental illness is before all else a person (45) – than with a value of clinical imperatives being more important.

Unlike valued social roles, individual goals differ from person to person. There is simply no way around this.

Any evaluation of this aspect using predefined categories necessarily loses some of that uniqueness. No standardized measure will have items such as Swim with dolphins, Breed snakes, Ride a motorbike, or any of the other idiosyncratic goals individuals set and attain on their recovery journey (these are all real-life examples of recovery goals). Any attempt to squeeze personal identity into predefined boxes can be justifiably criticised for its loss of meaning. This does not of course mean that personal goals should not be included in outcome evaluation – they remain central, despite the difficulties in assessing

Mike Slade

individual goal attainment. Rather, as Robert McNamara put it, “The challenge is to make the important measurable, not the measurable important” (46).

So an overall outcome evaluation strategy would measure two things. First, objective quality of life indicators, such as adequacy of housing, friendship, safety, employment and close relationships. Second, progress towards personal goals. This has relevance to both scientific research and routine practice.

Research and clinical implications This methodological proposal of focussing evaluation on social roles and personal goals can be applied in randomized controlled trials. For the invariant, predefined clinical end-point, more focus should be on valued social roles than traditional clinical preoccupations such as symptomatology and hospitalization rates. In addition, new technologies will be needed which allow for assessment of progress towards individualized goals. The most established approach is Goal Attainment Scaling, which involves the person identifying their own goals, along with markers of relative success or failure in attaining these goals (47). The resulting data can be aggregated across individuals to give an indicator of the overall success of the service at helping people to reach personally valued goals. But the approach is time-consuming and complex. Another approach is to identify a list of standardized outcome measures covering a range of domains, and for the consumer to identify the most relevant outcome measure from the list (48). This allows a degree of tailoring of outcome to each individual, without the complexity involved in Goal Attainment Scaling. Data can be easily aggregated, but using a predefined list of outcome measures reduces the extent to which assessment is individualized. Both of these approaches are currently being evaluated in the REFOCUS Study in England (researchintorecovery.com), which is maximizing the ecological validity of the randomized controlled trial by using personal goals (i.e., different for each participant) as the primary outcome.

In addition, this outcomes framework can be applied in routine clinical practice. The choice of outcome measure is based on an understanding of what is important, and an orientation around personal recovery challenges some traditional approaches to outcome measurement which focus on clinical imperatives, e.g., symptomatology, risk. Routine use of outcome measures is well-developed in some countries (49), and the most commonly

mandated measure is the staff-rated Health of the Nation Outcome Scale (50). This approach gives primacy to the staff perspective, and does not reflect the areas of greatest importance to people using mental health services (51).

An orientation towards personal recovery will require a different approach to routine outcome measurement, which actively aims to produce benefits at multiple levels in the system. At the person level, greater visibility of the individual’s goals can inform clinical decision-making about the most appropriate intervention. At the local level, aggregated data can provide a more recovery-sensitive measure of casemix. This can be used for workforce planning, to better match the skill-mix in a team with the needs of people on the team caseload. At the country / regional level, using an explicitly recoveryoriented approach to routine outcome measurement is one approach to shifting the culture of care: talking about recovery is in itself an intervention. Mental health systems which can show they are increasing the attainment of valued social roles and increasing the proportion of personally valued goals being met are likely to be supporting recovery in their practices.

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2. Ridgway P. Restorying psychiatric disability: Learning from first person narratives. Psychiatr Rehab J 2001;24:335-343.

3. Scottish Recovery Network. Journeys of recovery. Stories of hope and recovery from long term mental health problems. Glasgow: Scottish Recovery Network, 2006.

4. Davidson L, Sells D, Sangster S, O’Connell M. Qualitative studies of recovery: what can we learn from the person? In: Ralph RO, Corrigan PW. Recovery in mental illness. Broadening our understanding of wellness. Washington DC: American Psychological Association, 2005:147-170.

5. Andresen R, Oades L, Caputi P. The experience of recovery from schizophrenia: Towards an empirically-validated stage model. Aust NZ J Psychiatry 2003;37:586-594.

6. Slade M. Personal recovery and mental illness. A guide for mental health professionals. Cambridge: Cambridge University, 2009.

7. Anthony WA. Recovery from mental illness: the guiding vision of the mental health system in the 1990s. Innovations and Research 1993;2:17-24.

8. Roberts G, Wolfson P. The rediscovery of recovery: open to all. Adv Psychiatr Treat 2004;10:37-49.

9. Davidson L, Schmutte T, Dinzeo T, Andres-Hyman R. Remission and recovery in schizophrenia: Practitioner and patient perspectives.

Schizophr Bull 2008;34:5-8.

10. Secker J, Membrey H, Grove B, Seebohm P. Recovering from illness or recovering your life? Implications of clinical versus social models of recovery from mental health problems for employment support services. Disabil Soc 2002;17:403-418.

11. Bellack A. Scientific and consumer models of recovery in schizophrenia: Concordance, contrasts, and implications. Schizophr Bull 2006;32:432442.

12. Schrank B, Slade M. Recovery in psychiatry. Psychiatr Bull 2007;

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31:321-325.

13. Borg M, Karlsson B, Tondora J, Davidson L. Implementing personcentred care in psychiatric rehabilitation: What does this involve. Isr J Psychiatry Relat Sci 2009;46:84-93.

14. Thornicroft G, Tansella M. The mental health matrix. Cambridge: Cambridge University, 1999.

15. Amering M, Schmolke M. Recovery. Das Ende der Unheilbarkeit. Bonn: Psychiatrie-Verlag, 2007.

16. Roe D, Lachman M, Mueser KT. The emerging field of psychiatric rehabilitation. Is J Psychiatry Relat Sci 2009;46:82-83.

17. Royal College of Psychiatrists. Fair deal for mental health. London: Royal College of Psychiatrists, 2008.

18. American Psychiatric Association. Position statement on the use of the concept of recovery. Washington DC: American Psychiatric Association, 2005.

19. College of Occupational Therapists. Recovering ordinary lives: The strategy for occupational therapy in mental health services 2007-2017.

London: College of Occupational Therapists, 2006.

20. Department of Health. From values to action: The chief nursing officer’s review of mental health nursing. London: HMSO, 2006.

21. Office of the Deputy Prime Minister. Mental health and social exclusion.

London: Social Exclusion Unit, 2004.

22. Davidson L, O’Connell M, Tondora J, Styron T, Kangas K. The top ten concerns about recovery encountered in mental health system transformation. Psychiatr Serv 2006;57:640-645.

23. Elbogen EB, Johnson SC. The intricate link between violence and mental disorder. Arch Gen Psychiatry 2009;66:152-161.

24. Syx C. The mental health service system: How we’ve created a makebelieve world. Psychiatr Rehab J 1995;19:83-86.

25. Young AT, Green CA, Estroff SE. New endeavors, risk taking, and personal growth in the recovery process: Findings from the STARS study. Psychiatr Serv 2008;59:1430-1436.

26. Slade M, Hayward M. Recovery, psychosis and psychiatry: Research is better than rhetoric. Acta Psychiatr Scand 2007;116:81-83.

27. Grinshpoon A, Friger M, Orev E, Shvarts S, Kaplan Z, Abramowitz MZ et al. Relative perceptions of the needs of inpatients with schizophrenia and schizoaffective disorders. Isr J Psychiatry Relat Sci 2008;45:201-209.

28. Davidson L, Harding CM, Spaniol L. Recovery from severe mental illnesses: Research evidence and implications for practice. Boston: Center for Psychiatric Rehabilitation, 2006.

29. Abramowitz MZ, Grinshpoon A, Priebe S, Ponizovsky A. New institutionalization as a rebound phenomenon? The case of Israel. Isr J Psychiatry Relat Sci 2008;45:272-277.

30. Struch N, Levav I, Shereshevsky Y, Baidani-Auerbach A, Lachman M, Daniel N, et al. Stigma experienced by persons under psychiatric care.

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31. Slade M. 100 ways to support recovery. London: Rethink, 2009.

32. Higgins A. A recovery approach within the Irish Mental Health Services. A framework for development. Dublin: Mental Health Commission, 2008.

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33. Tondora J, Davidson L. Practice guidelines for recovery-oriented behavioral health care. Connecticut: Connecticut Department of Mental Health and Addiction Services, 2006.

34. Davidson L, Tondora J, Lawless MS, O’Connell M, Rowe M. A practical guide to recovery-oriented practice tools for transforming mental health care. Oxford: Oxford University Press, 2009.

35. Armstrong NP, Steffen JJ. The recovery promotion fidelity scale: Assessing the organizational promotion of recovery. Comm Ment Health J 2009;45:163-170.

36. Johnsen M, Teague GB, Herr EM. Common ingredients as a fidelity measure for peer-run programs. In: Clay S, Schell B, Corrigan P, Ralph R. On our own, together. Peer programs for people with mental illness.

Nashville, Tenn.: Vanderbilt University Press, 2005:213-238.

37. Russinova Z, Rogers ES, Ellison ML. Recovery-promoting relationships scale (Manual). Boston, Mass.: Center for Psychiatric Rehabilitation, 2006.

38. Shepherd G, Boardman J, Slade M. Making recovery a reality. Briefing Paper. London: Sainsbury Centre for Mental Health, 2008.

39. Davidson L, Flanagan EH. “Schizophrenics,” “borderlines,” and the lingering legacy of misplaced concreteness: An examination of the persistent misconception that the DSM classifies people instead of disorders. Psychiatry 2007;70:100-112.

40. Soffer N, Shahar G. Evidence-based psychiatric practice? Long live the (individual) difference. Isr J Psychiatry Relat Sci 2007;44:301-308.

41. Perkins R, Repper J. Social inclusion and recovery. London: Baillière Tindall, 2003.

42. Roe D, Gross R, Kravetz S, Baloush-Kleinman V, Rudnick A. Assessing psychiatric rehabilitation services (PRS) outcomes in Israel: Conceptual, professional and social issues. Isr J Psychiatry Rel Sci 2009;46:103-110.

43. Slade M. Routine outcome assessment in mental health services. Psychol Med 2002;32:1339-1344.

44. Slade M. The contribution of mental health services to recovery. J Ment Health 2009;18;367-371.

45. Anthony W. The principle of personhood: The field’s transcendent principle. Psychiatr Rehab J 2004;27:205.

46. Slade M, Priebe S (eds.). Choosing methods in mental health research.

Hove: Routledge, 2006.

47. Kiresuk TJ, Smith A, Cardillo JE. Goal attainment scaling: Applications, theory and measurement. Hillsdale, N.J.: Lawrence Erlbaum Associates, 1994.

48. Slade M, Hayward M. Recovery, psychosis and psychiatry: Research is better than rhetoric. Acta Psychiatr Scand 2007;116:81-83.

49. Trauer T (ed.). Outcome measurement in mental health. Cambridge: Cambridge University, 2010.

50. Wing JK, Beevor AS, Curtis RH, Park SB, Hadden S, Burns A. Health of the Nation Outcome Scales (HoNOS). Research and Development. Br J Psychiatry 1998;172:11-18.

51. Happell B, Happ. The value of routine outcome measurement for consumers of mental health services: Master or servant. Int J Soc Psychiatry 2008;54:317-327.

Isr J Psychiatry Relat Sci - Vol 47 - No.3 (2010)

Larry Davidson et al.

Applying Stages of Change Models to Recovery from Serious Mental Illness: Contributions and Limitations Larry Davidson, PhD,1 David Roe, PhD,2 Raquel Andres-Hyman, PhD,1 and Priscilla Ridgway, PhD1 1

Program for Recovery and Community Health, Department of Psychiatry, Yale University School of Medicine, New Haven, Connecticut, U.S.A. 2 Department of Community Mental Health, Faculty of Social Welfare and Health Sciences, University of Haifa, Haifa, Israel

Abstract Research on recovery has proliferated in recent years.

Some investigators have advanced stages of change models that segment the overall process of recovery into discrete and sequential phases, through which a person progresses from being overwhelmed by mental illness to taking on an increasingly active role in understanding, managing and overcoming the impact of psychiatric disability. The authors review this body of literature, and reflect on the contributions and limitations of stages of change approaches to understanding mental health recovery. They conclude that stages of change models need to more accurately reflect the non-linear nature of recovery, the fact that processes are influenced by person-disorder-environment interactions, and the fact that the person’s own motivations for change and decisions in this regard—while of central importance— are by no means exclusive factors in recovery, as they do not take into account sufficiently such issues as discrimination and the presence or absence of crucial resources and supports. A richer set of concepts is needed as we continue to deepen our understanding of the complex, dynamic and ongoing process of mental health recovery.

Qualitative research into the nature of processes of recovery in mental illness has begun to proliferate in recent years. This line of research began with the pioneering longitudinal studies of Strauss and colleagues in the 1980s (1-3) into the early 1990s (4). Such research has gradually expanded beyond its original focus on what

might be considered “full” recovery—referring to an absence of psychiatric symptoms or signs of impairment and a return to normative social functioning—to include the current focus on processes involved in learning how to live a full and gratifying life in the presence of enduring psychiatric symptoms and disability—which we have suggested referring to as “being in recovery” as opposed to “recovery from” mental illnesses (5).

While there remains much to be learned about various forms of recovery and the possible relationships among them, a number of characteristics seem to be common to all such processes. These characteristics were initially noted by Strauss and colleagues in their pioneering work and have been confirmed by numerous studies since. They include the active role of the person with the disorder, the influence of person-disorder-environment interactions, the semi-independent nature of recovery across various domains (what Strauss and colleagues [1] referred to as their being “loosely linked”), and the fact that the change process is non-linear and can be either incremental or abrupt in nature.

Some of the work carried out over the last decade has built upon this earlier foundation and sought to expand upon these initial insights to more fully elaborate theories of recovery. An increasing number of recent studies have begun to adopt a “stages of change” approach, in which investigators describe a series of inter-related stages which they hypothesize together constitute an overall process of recovery. Such an approach makes intuitive sense. Theoretical and empirical ideas about stages of development and their associated tasks have greatly enriched our understanding of processes of change and growth and have strongly influenced men-

Address for Correspondence: Larry Davidson, PhD, Program for Recovery and Community Health, Department of Psychiatry, Yale University School of Medicine, Erector Square 6 West, Suite #1C, 319 Peck Street, New Haven, CT 06513, U.S.A. Larry.Davidson@Yale.edu

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tal health practice. Freud, Erikson, Mahler and Piaget all devised influential stage theories, and stage models have also informed medical practice. Kubler-Ross (6), for example, developed a stage model to describe processes of death and dying that resulted in a radical shift in approaches to end of life care.

Within the broader behavioral health field, one stage of change model has become increasingly influential over the last decade: the Transtheoretical Model, which emerged initially from research on addiction (7). It has been tempting for investigators examining processes of recovery in mental illness to adapt this framework for their work, and to identify and understand various stages of mental health recovery as following a similar path (e.g., 8-10). The identification of well-defined stages of change may be useful in deepening our understanding of complex processes, and in generating implications for policy and for clinical practice in mental health as it has in the field of addictions, in which services and supports are now being tailored to meet the needs of people at various stages of substance use recovery.

In this paper, we examine recent efforts to understand processes of recovery in mental illness according to stages of change models. Our assumption is that such approaches have both strengths and limitations, and that it would be useful for the field to pause and consider both prior to moving further down this path. We begin by providing a brief description of the Transtheoretical Model. We then review a series of qualitative studies that have attempted to identify phases of mental health recovery, and integrate these findings into a provisional account of what has been learned to date with respect to identifiable components of the recovery process. We also consider several recent quantitative studies that have tested the applicability of the Transtheoretical Model to mental health recovery. In closing, we reflect on the contributions, as well as the complexities, generated by applying stages of change approaches to mental health recovery and offer a few cautions in relation to limitations of this approach.

A Brief Introduction to the Transtheoretical Model of Change The Transtheoretical Model of change (11-14) emphasizes that behavioral change is a multi-faceted process that occurs in increments and involves varied tasks in each of a variety of stages. According to this theory, health related change efforts involve a series of steps 214

through which people pass as they make significant progress in altering patterns of behavior. Stages include pre-contemplation, contemplation, preparation, action and maintenance (13). We describe each of these stages briefly below.

The process begins in the stage of “pre-contemplation,” which refers to the period prior to any actual behavioral change, in which the individual is not yet considering (has not even yet begun to think about) change. From there the person may move into a period of “contemplation,” which refers to a stage in which the person begins to consider the possibility of change and to evaluate the pros and cons associated with such efforts. Should the benefits of change be viewed as outweighing the drawbacks, the person then moves on to “preparation” and begins planning to make changes to which he or she is truly committed. After the planning stage, the person then goes on to take “action” and makes specific changes to end unhealthy behaviors and/or increase health-engendering behaviors. When the action stage is successful a person may enter the fifth and final stage of change, termed “maintenance,” in which the person works to sustain the positive behavioral change over the longer term. While progress toward maintenance of healthy behaviors is the goal, a person may also relapse and recycle through earlier stages (15), retracing his or her steps through a kind of successive approximation, learning and accumulating experiential knowledge even through setbacks as the process evolves over time. In fact, Prochaska and colleagues (7) have described the Transtheoretical Model in terms of a spiral in which people may return and advance across stages over time.

While developed initially as a heuristic for understanding recovery in addiction, the Transtheoretical Model has subsequently been applied in a variety of behavioral health areas, including seat belt use, smoking cessation, dieting and exercise, and others. Investigators have found these concepts to be relevant across many health-related changes, suggesting that while the targets for behavioral change may differ, the structure of the change process remains basically the same (16). One important implication of these findings is the suggestion that treatment approaches will be most effective when they are matched to a given individual’s current stage of change and oriented toward facilitating the person’s movement along this continuum (13). Conversely, interventions mismatched to the person’s stage of change will likely have little positive impact. For exam-

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ple, action-focused interventions will have little effect upon someone who is at a pre-contemplation stage, while a person actively engaged in learning relapse triggers no longer needs persuasion to enter recovery. With this background in mind, let us now turn to see what progress has been made in applying stages of change ideas to recovery in mental health.

Review of Current Conceptual Models of Phases of Recovery We begin our review of relevant recovery research with the pioneering work of Strauss et al. (1) mentioned above. These investigators conducted an intensive prospective study of 63 individuals with psychotic disorders, combining quantitative and qualitative data collected bi-monthly, with follow-ups over a 2- to 3-year period. Their results suggested conceptualizing the evolution of recovery as a dynamic process that is influenced by the person interacting with both the disorder and the environment. Emphasizing the nonlinear nature of the course of serious mental illnesses, the authors did not propose a linear sequence of stages, but rather attempted to identify several core mechanisms associated with turnaround and improvement.

For instance, Strauss first introduced the term “moratorium,” and later the term “woodshedding” (17), to refer to a phase during which there are important internal changes underway in the person that are generally hidden from, or not observable to, others. Similarly, Strauss used the term “mountain climbing” to refer to a mechanism through which successful efforts to make changes in one context (e.g., making friends or managing symptoms) were used to stimulate or scaffold change in other life contexts (e.g., returning to work).

Extending this line of research, Davidson and Strauss (4), in work based on follow-up interviews with 63 individuals recovering from a psychotic episode, described a four-phase process of self and identity reconstruction.

The phases involved the person’s: 1) discovering the possibility of a more active sense of self than that which had been taken over by the illness; 2) taking stock of the strengths and the weaknesses of this emerging self, and assessing possibilities for change; 3) putting into action some of the recently discovered or rediscovered aspects of the self and integrating the results of these actions into a revised sense of identity; and 4) employing the enhanced sense of self to provide a refuge from the disorder, thereby creating additional resources for coping.

Baxter and Diehl (18) identified a three-stage recovery process based on interviews with 40 mental health program participants. The first stage in their model, “recuperation,” included feelings of dependence, denial, confusion, despair and anger. The second stage was one of “rebuilding,” which they characterized as involving regaining independence, is often accompanied by powerful emotions of self-doubt, grief, the need for acceptance and active learning. Finally, the third stage they posed was “awakening,” which included reclaiming a sense that “I am somebody,” and having a dream, accompanied by accepting self and others, and building confidence.

In a similar vein, Pettie and Triolo (19) used two case examples to highlight two key developmental tasks they viewed as crucial to recovery: the struggle for meaning and the reconstruction of a positive sense of identity.

Based on interviews and focus groups with 18 people living in the community who were diagnosed with severe mental illness, Young and Ensing (20) identified three general stages of recovery. The first, “initiating recovery,” included overcoming “stuckness,” acknowledging illness, having the desire and motivation to change, and finding a source of hope and inspiration.

The second stage, “regaining what was lost and moving ahead,” focused on a redefinition of self including gaining insights about self, about the relationship between self and illness, and about living in the world following the onset of mental illness. It also included learning, returning to basic functioning including taking care of self, being active, and connecting to others. The third and final stage referred to improving quality of life, attaining an overall sense of well being, and striving to reach new potential and higher functioning.

Roe and Ben-Yishai (21) used a narrative framework to analyze interviews conducted with 43 people recovering from psychosis, and identified five distinct phases that speak to different relationships between the person and the disorder. In the first phase, participants separated their “healthy” self from their “ill” self. In the second phase, the “healthy” self remained a subject, whereas the illness became an object. In the third phase, the self used the narrator’s position to change the object, the illness, making it more tolerable. In the fourth phase, the narrator became the protagonist of his or her own story. In the fifth and final phase, participants reached a point at which they demonstrated the capacity to integrate self and illness.

Spaniol et al. (22) analyzed interviews conducted every four to eight months over a four-year period with 215

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12 people with a psychiatric disability and identified four stages of recovery. In the first stage, the participants were “overwhelmed by disability,” and felt primarily confused, lacking control, and powerless. The second stage was characterized by “struggling with psychiatric disability,” including developing an explanation for what was happening and recognizing the need to develop ways to cope with the challenge of mental health problems. The third stage, “coping and living with the disability,” included gaining a stronger sense of self, utilizing coping strategies, and feeling more in control and confident about managing the condition. In the fourth stage people began “establishing a lifestyle beyond the disability,” at which point mental illness became a much smaller part of the person’s world and no longer got significantly in the way of the person having a satisfying and productive life.

Jacobson (23) conducted a dimensional analysis of 30 recovery narratives. While acknowledging the recovery process may be a unique subjective experience for each person, she identified component processes that corresponded to four central dimensions: 1) “recognizing the problem,” which involves naming and framing one’s experience and creating an explanatory model; 2) “transforming the self,” using methods in congruence with one’s explanatory model; 3) “reconciling the system,” which entails finding ways of using the mental health system; and, 4) “reaching out to others,” which is an on-going process of connecting with other people.

Ridgway (24) analyzed four published first-person narratives of recovery. While this work did not propose a specific set of stages, and acknowledged the non-linear nature of recovery, it did emphasize several common passages or tasks in the recovery process, including “moving from despair to reawakening of hope,” “from withdrawal to engagement and active participation in life,” “from denial to achieving understanding and acceptance,” “from passive adjustment to active coping,” “from seeing oneself primarily as a person with a mental disorder to reclaiming a positive sense of self,” and “from alienation to having a sense of meaning and purpose in life.” Ridgway also highlighted the social nature of the recovery process.

Based on a select sample of the recovery literature, Andresen, Oades and Caputi (25) proposed a 5-stage model which included: 1) a moratorium characterized by denial, confusion, and withdrawal; 2) awareness of a possible self other than that of “sick” person; 3) preparation, in which the person begins working on recovery; 216

4) rebuilding, through working on a positive identity, setting and working on goals, and regaining meaning in life; and 5) growth, which involves living a full and meaningful life and looking forward to the future.

In addition to these studies, stage models of recovery developed by group consensus have had an important influence within the field. Ralph and the Recovery Advisory Group (26) created a stage model of recovery based on consensus of lived experience among a group of consumer/survivor leaders (26, 27). This model included six stages: “anguish” or bottoming out, “awakening” or turning point, “insight” or beginning of hope, “action plan” or finding a way, “determined commitment to be well,” and a final stage of “well-being and empowerment.” Ralph and colleagues emphasized that complex internal and external factors have an impact on the recovery process and that movement across the stages is often non-linear and recursive. A recovery stage model developed by the Office of Consumer Services in Ohio also suggests that people go through clearly delineated stages in the process of recovery, leading gradually from being dependent/unaware, through becoming dependent/aware, to becoming independent/ aware, and finally achieving the status of being interdependent/aware. The level of dependence relates to service use and self-sufficiency in achievement of optimal functioning, and the level of awareness relates to insight into one’s own condition and knowledge of the available system and community resources one can draw upon to move forward in recovery (28).

Finally, we are aware of four attempts to use quantitative measures to test the validity of the Transtheoretical Model of change for people with mental illnesses. Three of these studies found that people with psychiatric disorders could generally be classified as falling into one of the five stages of pre-contemplation, contemplation, preparation, action, and maintenance based on an assessment of their readiness to make behavioral changes, as follows.

Hilburger and Lam (29) conducted a study in which 193 participants completed the Change Assessment Questionnaire (CAQ-TBI). Their results suggested that stages of change can be identified among people with serious psychiatric disorders, and that the pattern of stages of readiness for change found in this population were similar to those found in previous studies.

Similarly, Rogers and colleagues (10) conducted a study in which 163 people with serious mental illnesses who were receiving intensive services completed a Change

Larry Davidson et al.

Assessment Scale (CAS) along with a number of other rating scales. Their results demonstrated that psychometric properties of the scale did not differ significantly when used by people with mental illnesses as compared to other populations.

Similar results were reported in a study conducted in China that assessed 120 people with mental illnesses who received psychiatric rehabilitation services in Hong Kong and Taiwan using the CAQ-SPMU, which was adapted for this population from the standard Change Assessment Questionnaire (8). Finally, in a novel selfrating approach, Ridgway and Press (30) developed a 7-item subscale related to the stages of change in the Transtheoretical Model as part of a larger recovery instrument. In a study of more than 300 long-term service recipients, they found that almost all participants could place themselves within one of the stages of change, and that stage of recovery was related to patterns of service use and to the number of recovery markers (intermediate outcomes) the person currently experienced, with progressive stages of recovery related to higher numbers of positive outcomes, and experience of setback related to a severe decline in the number of recovery markers claimed. Taken together, these initial attempts to test the validity of the Transtheoretical Model of change through quantitative research provide preliminary empirical support for the possible relevance of the model for mental health recovery and suggest that stages of change hold potential for contributing to our understanding of processes of recovery.

In order to consider this potential more closely, we will now map the findings of the qualitative studies described above onto the five stages of the Transtheoretical Model in Table 1 below. One thing that is apparent from a cursory glance at this Table is that the findings do not map neatly onto the five stages of change; it is not readily apparent in several instances which phases of recovery belong in which category. We have attempted to achieve a â&#x20AC;&#x153;best fit,â&#x20AC;? though, and will now consider the elements from each model within each of the stages of change, prior to considering the applicability of the Transtheoretical framework for the mental health field.

Contributions and Limitations In terms of potential contributions, application of the Transtheoretical Model to recovery in serious mental illness seems to assist in the integration of diverse findings and to result in a somewhat more coherent picture of the various components present in this complex set of phenomena. The presence of stages of change makes intuitive sense, and has been confirmed empirically in a preliminary set of quantitative studies. Finally, it is conceivable that progress might be made in mental health services comparable to that enjoyed by services for persons with addictions, should mental health interventions be oriented to where a given person is in relation to the stages of recovery at any given time.

Much more work remains to be done, however, as we know relatively little about the earliest stages of the

Table 1. Plotting of Research Findings regarding Phases of Recovery within the Framework of the Stages of Change Model Study

Pre-Contemplation

Contemplation

Preparation

Action

Maintenance

Davidson & Strauss (4)

Discovering a more active self

Taking stock of the self

Putting the self into action

Employing the enhanced sense of self

Baxter & Diehl (18)

Recuperation

Pettie & Triolo (19)

Struggle for meaning

Young & Ensing (20) Roe & Ben-Yishia (21)

Reconstruction of a positive sense of identity

Initiating recovery Separating self from illness

Spaniol, Wesiorski, Gagne & Anthony (22) Ridgway (24)

Awakening, Rebuilding

Illness become object

Overwhelmed by disability

Despair, withdrawal, passive adjustment

Jacobson (23)

Hope

Regaining what was lost and moving ahead

Improving quality of life

Self as narrator

Self as protagonist

Integrating self & illness

Living with disability

Struggling with disability

Disability becomes smaller part of personâ&#x20AC;&#x2122;s life

Engagement

Recognizing the problem

Active coping, Reclaiming a positive sense of self and meaning and purpose in life Transforming the self

Reaching out to others

Andresen, Oades & Caputi (25)

Moratorium

Awareness of possible self

Preparation

Rebuilding

Growth

Ralph et al. (26)

Anguish

Awakening, Insight

Action plan

Determination

Well-being

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Table 2. An Emerging Model of Stages of Change in Mental Health Recovery Stage

Description

Pre-contemplation (or pre-recovery)

This stage concerns the period before the individual considers or undertakes change and, in this instance, could be called “pre-recovery.” Only a few of the models reviewed labeled such a stage explicitly, generally in bleak terms.

Young and Ensing (20) characterized this phase as one of stuckness, while Baxter and Diehl’s (18) first stage included dependence, denial, confusion, anger, and despair. Despair or anguish also may be considered pre-recovery states in the models of Ralph and colleagues (26) and Ridgway (24). The idea of the self being taken over, engulfed, immersed, or overwhelmed by the disorder prior to recovery is seen in Davidson and Strauss (4), Roe and Ben-Yishai (21), and Spaniol and colleagues (22), who also describe people as feeling confused and powerless prior to recovery. The lack of awareness of one’s own needs and condition and dependence upon others may also be elements of pre-recovery (28).

Contemplation

This stage involves a growing awareness of the desirability of behavioral change and beginning attempts to think through what such changes might entail. Only a few of the models described activities associated with this stage.

Young and Ensing’s (20) first stage of “initiating recovery” included tasks that may fall within this stage, including acknowledging illness and having the desire and motivation to change. Jacobson’s (23) phase of recognizing the problem is one task that may fit here, while Ridgway (24) describes the need for acceptance of the challenge of recovery. It is interesting to note, however, that most models do not emphasize this stage or attribute much content to what is transpiring during this period.

Preparation

This stage involves planning for change and making sure that the person and his or her environment have what it will take for change to be effective. Several aspects of existing models fit within this stage, such as Davidson and Strauss’ (4) discussion of people taking stock of their strengths, weaknesses, resources, and possibilities for change prior to engaging in action. Andresen, Oades and Caputi (25) explicitly include a preparation stage in their model, while Spaniol and colleagues (22) and Jacobson (23) include the tasks of developing an explanation for what is happening and recognizing the need to develop ways to cope with this challenge. Ridgway (24) includes moving from despair to hope, while Ralph and others (26) included cultivating insight within their model. Finding meaning and purpose appeared to be an important task of this stage as did a transformation of sense of self from passive to active (4, 19, 21, 23, 24).

Action

In this stage the person makes intentional efforts to cope with or overcome his or her illness and may refer to the person’s active involvement in mental health care, such as taking medication or participating in skills training, cognitivebehavioral therapies, and supported education or employment. This stage also involves developing resources for active coping, devising and putting coping efforts into practice, and feeling more in control and more confident about managing one’s condition (4, 22, 24). In this regard, Davidson and Strauss (4) include in their model the development of a more active sense of self and putting into action newly discovered and rediscovered aspects of the self. Baxter and Diehl’s (18) stage of rebuilding independence is clearly an aspect of the action phase, although they found that this stage may be accompanied by mixed emotions and required on-going learning. Andresen, Oades and Caputi (25) explicitly included a rebuilding phase as people in recovery set and worked on personal goals. Young and Ensing (20) identified being more active, including working to regain what was lost, returning to basic functioning, taking care of self, and moving ahead as elements of this phase. Finally, several of the models indicated that the action phase involves and results in reclaiming a stronger sense of self and regaining a larger scope on life, as well as moving in a determined fashion away from a life space more fully claimed by the disorder (4, 18, 19, 21, 22, 24, 25).

Living beyond disability (formerly labeled maintenance)

In addiction, this stage involves sustaining the positive behavioral change once it is accomplished. In this respect, however, mental health recovery models seem to transcend the Transtheoretical Model in posing an ongoing phase of personal growth and development rather than a steady state of “maintenance” as the final stage of change. For Spaniol and colleagues’ (22), this is referred to as “living beyond the disability,” while Young and Ensing (20) refer to attaining an overall sense of well being, but also discuss improving quality of life and a continuous striving to reach new potential and higher functioning. Andresen, Oades and Caputi’s (25) final phase is growth, which involves both living a full and meaningful life and looking forward to the future. Ralph and colleagues’ (26) final stage involves both well-being and empowerment. We should note that while these stages differ from the original idea of “maintenance,” they are consistent with more recent advances in models of change within the addictions field, in which a new stage of “transcendent recovery” is being proposed to capture the heightened level of personal and interpersonal functioning that some people achieve as a result of having transcended the limitations imposed by addiction (44). Transcendent recovery is more consistent with the mental health findings, and suggests that people do not reach a point at which they can simply stand still, but continue to move forward beyond their illness.

process; those stages which may hold the most promise for the development of new interventions. The studies reviewed here had little to say about the pre-recovery and contemplation stages in particular, and have yet to identify the possible mechanisms or “turning points” (1, 3) by which people are able to move from despair to hope or from being overwhelmed and powerless to entertaining the possibility of acting on their own behalf. This is disappointing, as the possibility of matching interventions to stages of change holds particular 218

promise for the field of mental health mostly in terms of developing effective interventions for these earliest stages of the recovery process. A word of explanation is in order.

Prior to development of the Transtheoretical Model, a common assumption in addiction practice was that people had to “hit bottom” and decide to pursue abstinence on their own before professional interventions could have any effect. When people left treatment prematurely, had relapses, or found treatments ineffective,

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addiction providers could explain these occurrences as being due to the person’s “lack of readiness.” A major advance has been made in addiction treatment through the introduction of motivational interviewing targeting the pre-contemplation and contemplation stages, offering providers tools they can use to increase an individual’s awareness of, and motivation for, change (31, 32).

The need for early-stage interventions is equally relevant in the mental health field. It has been extremely difficult for people to benefit from active interventions when they do not believe that they have a psychiatric disorder to begin with. In a field that has tended to use such labels as “denial,” “lack of insight,” “resistance,” and “lack of motivation” as much as our addictions colleagues—and which is equally fraught with premature treatment drop out and high relapse rates—interventions that increase a person’s interest in and motivation for a turnaround to recovery and active treatment would be enthusiastically embraced by providers and family members alike. But the models reviewed above offer little instruction in this regard.

It also has been proposed that stage models might influence the field to increase attention to the need for active support in the preparation for recovery through practices such as person-centered planning (33, 34), and might also increase the potential for successful interventions in the active recovery phase, as in areas such as self-directed care. Innovations in assessment methods might suggest where a person is in the change process, help to identify what roles he or she wishes to play, and determine how much authority and responsibility he or she wishes to take on in advancing his or her own recovery, as people set their own goals for change (34).

To date, the Ohio emerging best practices in recovery model provides the only approach which links stage of change to a fully explicated set of relevant treatment modalities (28), but other implications for a match between stage of recovery and specific interventions are beginning to be advanced (35).

Prior to going further down this road, though, there are a few concerns about such approaches that we would like to point out. First of all, and perhaps most importantly, the Transtheoretical Model assumes that the primary driver of the behavioral change process is the person him or herself. While most of the qualitative studies reviewed above highlight the active role of the person in recovery—perhaps in part to counter-balance over one hundred years of history during which the person was viewed as passive and helpless in the face of

an all-consuming illness (36)—we argue that we should not draw a simple equivalence in this regard between addiction recovery and recovery in mental illness.

There are many influences on mental health recovery that have been described over the preceding 25 years that lie beyond the reach of the person’s own behavior. Elements such as the presence or absence of one or more accepting others, hope-filled environments, and availability of opportunities and the provision of ongoing community supports (e.g., decent, safe, affordable housing, job coaches) lie largely outside of the person’s control. In addition, some psychiatric conditions are relatively unpredictable, and a person may relapse and have set backs despite intensive active coping efforts and adherence to treatment. While such complexity may also be true in some respects in the case of addiction recovery, there is no equivalent act akin to the decision to abstain from alcohol or other substances within mental health recovery.

Motivational interventions have generally proven to be successful in assisting people to engage in treatment and improve substance use outcomes (37-39) as well as to increase readiness to engage in and adhere to various health promoting behaviors (40-42). At the core of the approach is helping people to explore and resolve ambivalence to accomplish behavior change.

While many of the core principles of motivational techniques—such as their basis in a collaborative, noncoercive approach involving active listening—are consistent with recovery-oriented practice and likely to be effective in helping people with psychiatric disabilities resolve ambivalence as well, this is relevant only when ambivalence poses a barrier to recovery. These techniques inadequately account for instances in which people are motivated, active agents in behavioral change but yet nonetheless confront barriers to recovery that are beyond their control.

Our concern in this regard is that viewing the recovery process in mental health solely through the lens of a model of personal behavioral change runs the risk of putting all the onus and responsibility for recovery on the shoulders of the person with the psychiatric disability, effectively absolving other people, the mental health system, and society at large from their responsibility for making hope-filled and culturally appropriate environments, adequate opportunities and resources, effective treatments, responsive supports, and welcoming communities available to people in need. As a result, important issues of social justice, such as discrimination and 219

Stages of Change

the restoration of the civil and human rights of persons with mental illnesses, can be downplayed or left out of the picture altogether (43). Only the model offered by Ralph and colleagues (26) begins to tackle the complex interaction of internal and external factors that can influence the recovery process.

Beyond this basic challenge posed by the complex nature of serious mental illness and its place within the ecology of contemporary society, none of the models so far described deal adequately with the non-linear nature of recovery. Most stage models imply linearity, and even when disclaimers are made that the stages do not necessarily unfold in a linear or sequential fashion (see, e.g., 26), the models themselves tend to lead people to view the various stages as building upon each other.

But simply stating that recovery is more complicated than a linear sequence—as we have ourselves done in the past—contributes little to new knowledge. The field needs to build models of recovery that acknowledge the non-linear nature of the process from the start, and which allow for the fact, for example, that many people can make significant progress in recovery without ever having accepted having a mental illness to begin with.

As Strauss and colleagues pointed out twenty years ago, one person may wait to enter the job market until his or her symptoms have responded to anti-psychotic medication, while another person can find returning to work to be a more effective way of reducing the same kinds of symptoms than taking medication. In this regard, increased attention to concepts of “regulatory mechanisms” or “change points” as suggested by Strauss and his colleagues (1) may prove useful, as they do not go beyond available data and do not purport to speak to any broader, normative, overarching step-wise process.

They refer instead to discrete components or junctures within a multi-dimensional and multi-determined context, in which the person and his or her own efforts play a central and crucial, but by no means exclusive, role.

Conclusion We have learned much over the previous 20 years about the various processes and components involved in both recovery from and being in recovery with a serious mental illness. We still have much more to learn as we attempt to translate our understanding of recovery into effective interventions. For the time being, we suggest continuing the exciting and promising work of exploring the terrain of first person accounts of recovery, but 220

also suggest proceeding with caution when adopting or adapting stages of change models or otherwise speculating beyond the data which are currently available.

We must build increasingly more finely grained and complete models that reflect the reality that recovery is not a simple linear or sequential process and that demonstrate how recovery is influenced by many factors in addition to the person’s own degree of motivation to make specific behavioral changes in his or her life.

Focusing on understanding and building knowledge concerning the earliest phases of recovery may be imperative in order to generate new interventions that may more effectively assist people in their turnaround to recovery, encourage active engagement in treatment and rehabilitation, provide access to needed recovery supports, and encourage increasing self management of one’s condition. In general, models of recovery need to do a better job of accurately reflecting the non-linear nature of the processes involved, the importance of understanding that these processes are influenced by person-disorder-environment interactions, that the various domains of functioning affected are only loosely linked, and the fact that the person’s own motivations for change and decisions in regard to recovery—while central—are by no means the only important factors positively or negatively influencing his or her potential for recovery. More targeted exploration to gain knowledge of the micro-processes of recovery and more detailed and specific understanding of regulatory mechanisms and change points will be useful in filling in some of this missing knowledge as we continue to deepen our understanding of this complex, dynamic and ongoing process.

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3. Rakfeldt J, Strauss JS. The low turning point. A control mechanism in the course of mental disorder. J Nerv Ment Dis 1989;177:32-37.

4. Davidson L, Strauss JS. Sense of self in recovery from severe mental illness. Br J Med Psychol 1992;65:131-145.

5. Davidson L, Roe D. Recovery from versus recovery in serious mental illness: One strategy for lessening confusion plaguing recovery. J Mental Health 2007;16:1-12.

6. Kubler-Ross E. On death and dying. New York: Macmillan, 1969.

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Isr J Psychiatry Relat Sci - Vol 47 - No.3 (2010)

An Examination of Stress and Coping among Adults Diagnosed with Severe Mental Illness Stephanie Robilotta, MA, Ecena Cueto, MA, and Philip T. Yanos, PhD John Jay College of Criminal Justice City University of New York Psychology Department, New York, U.S.A.

Abstract The present study explored the types of major life and chronic stressors that people with severe mental illness experience, and the coping strategies that are used in response to them. Twenty-eight adults with severe mental illness completed qualitative interviews focused on stress and coping in the prior six months.

Participants reported experiencing disruptive major life events including the sudden death of a loved one, loss of housing, and criminal victimization, as well as chronic stressors such as psychiatric symptoms and substance abuse issues, substandard living conditions, legal problems, and health concerns. Results suggested that persons with severe mental illness frequently use problem-centered coping strategies in response to most types of stressors, including major life events, although this occurred after the initial application of avoidant coping strategies. Future research should explore whether or not the identified stressors and the coping strategies used in response to them are unique to this population.

Over the last few decades, increased emphasis has been placed on the community integration of individuals diagnosed with severe mental illness (SMI) and the enhancement of services to facilitate this transition (1, 2). Although there are several factors that may affect community integration, the experience of life stressors and the use of coping strategies to deal with these external demands may substantially contribute to this process (3). In addition to the stress associated

with psychiatric symptoms that individuals with SMI encounter (4), there appear to be several psychosocial stressors that may be frequently experienced within this population (5-7). Given the interaction that exists between external stressors and symptoms (3), identifying and understanding these stressors and coping responses may assist in designing community mental health services that can better meet the needs of persons with SMI. Three major categories of stressors have been identified within the broader social science literature: life events, chronic strains and daily hassles (8). Life events are typically unexpected significant changes that require substantial readjustment within a short time period (8, 9). Despite the relatively rare occurrence of life events, in comparison to other types of stressors, they have been found to have considerable impact on psychological well-being in addition to increasing symptom severity and the likelihood of psychiatric relapse (10, 11). Chronic strains (or stressors) refer to â&#x20AC;&#x153;the persistent or recurrent difficulties of lifeâ&#x20AC;? (12, p. 7) that generally continue over an extended period of time. The final category of stressors, daily hassles, includes minor sporadic events that transpire on a day-to-day basis usually entailing minimal adjustment (8).

Regarding the occurrence of stress, the existing literature indicates that individuals of lower socioeconomic status (SES) may experience specific types of stressors more frequently than people of high SES (13, 14).

Although these findings may be applicable to people with SMI, due to the association between psychiatric illness and socioeconomic status (15), there may be additional stressors that are unique to this population. Indeed, poverty, homelessness (5), social rejection and stigmatization (6, 7), and vulnerability to criminal victimization (16) are a few of the identified psychosocial stressors that persons

Address for Correspondence: Stephanie A. Robilotta, MA, John Jay College of Criminal Justice, Psychology Department, 445 West 59th St., New York, NY 10019, U.S.A. stephanie.robilotta@jjay.cuny.edu

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AL.

with SMI may be more likely to experience. However, a recent review (17) concluded that relatively little is still known about the experience and impact of stressors among persons with SMI, particularly how such individuals appraise the stressors that they encounter.

The potentially high exposure to psychosocial stressors, coupled with the considerable number of psychiatric symptoms that may occur within this population, highlights the importance of coping responses to manage these experiences. Previously, Roe, Yanos and Lysaker (4) discussed the complex range of coping responses that need to be considered among individuals with SMI. They characterized coping that is employed in response to a symptom or stressor as “reactive” coping and distinguished between primarily problem-centered and avoidant responses to stressors. While there has been a considerable amount of research pertaining to the utility of particular coping strategies, there is a need for a more nuanced understanding of how coping responses may vary depending on the context of the stressor being experienced, and how the use of multiple coping strategies may impact the response to stress. The purpose of the present study was to shed light on the types of major life and chronic stressors that people with SMI experience, and the coping strategies that are used in response to them. Given the difficulty of examining such issues using traditional “checklist” approaches, the present study used qualitative methods to elicit detailed narratives relating to stress and coping.

Method Participants

Participants in this study included 28 adults (16 male and 12 female) recruited through two community mental health agencies servicing adults diagnosed with SMI: a day treatment program located in Newark, New Jersey (15 participants), and three Assertive Community Treatment teams affiliated with the same agency operating in the East and West Harlem neighborhoods of New York City (13 participants). All participants were voluntarily participating in services. At the time of recruitment, individuals participating in Illness SelfManagement (18) services at these programs were eligible to participate in the study. These services included both individual and group-based services designed to educate clients about how to cope with symptoms and stressors. The study focused on individuals participating in Illness Management in order to focus particularly

on persons more likely to develop new coping strategies during the course of the larger six-month study. In the first recruitment site, nearly all clients were participating in Illness Management, so this criterion did not restrict eligibility; in the second location, a somewhat smaller group of clients participated in these types of services.

Participants had a mean age of 45.43 (SD = 9.23) and a mean educational level of 11.17 (SD = 2.15). Regarding ethnic identification, four (14.3%) participants identified themselves as European-American, 17 (60.7%) as African American, six (21.4%) as Latino and one (3.6%) as Asian/Pacific Islander. Regarding psychiatric diagnosis, participants were primarily diagnosed with either a psychotic disorder or a mood disorder; 10 participants (35.7%) had a primary chart diagnosis of schizophrenia at the start of the study, while six (21.4%) were diagnosed with schizoaffective disorder, three (10.7%) with bipolar disorder, seven (25%) with major depression or mood disorder NOS, and two (7.1%) with post-traumatic stress disorder. Participants were largely diagnosed with cooccurring substance abuse problems, with 22 (78.6%) having a secondary substance use diagnosis recorded in their charts. Approval was received from the Institutional Review Boards of Rutgers University, the University of Medicine and Dentistry of New Jersey, and John Jay College of Criminal Justice, and all participants provided informed consent before participating in the study.

Procedure

Data were drawn from two baseline interviews gathered during a larger six-month study which also consisted of two separate periods of 10 consecutive daily interviews and 26-month follow-up interviews. During the first baseline interview, participants answered a series of open-ended questions focused on eliciting narratives of coping with symptoms and stressors experienced during the previous six months. During the second interview, researchers were given the opportunity to follow-up on and further explore areas discussed in the first interview, as well as obtain information regarding demographics, symptoms and recent substance use.

Open-ended interviews were tape-recorded and transcribed for subsequent analysis.

Assessments

Semi-structured, qualitative interviews were conducted with all participants. The focus of these interviews was to gather information needed to construct a valid “narrative” describing the individual’s sequence of efforts used to cope 223

An Examination of Stress and Coping among Adults Diagnosed with Severe Mental Illness

with symptoms and other problems related to mental illness experienced within the past six months. Interviews started with a broad overview of the subject matter (akin to the “grand tour question” suggested by Spradley, 19), and then began with a single open-ended question: “How have things been going for you over the last six months?”

Interviewers were instructed to listen intently to leads provided in response to this question and to follow-up in-depth on all areas raised by the participant. In-depth follow-up consisted of trying to elicit the “story” of “what happened” as it unfolded over time in the case of a specific event, or a recent occurrence of an ongoing symptom or chronic stressor. Interviewers were instructed to elicit information on coping for each event discussed (“How did you deal with that? Tell me about all the things you did”). Additionally, in cases in which participants did not spontaneously offer information, interviewers were given specific areas to explore, such as positive changes, stressful events and psychiatric symptoms.

(behavioral and cognitive problem-centered actions, social support efforts, prescribed medication use, and “active” distraction efforts such as meditative refocusing), neutral (behavioral and cognitive distraction efforts, use of non-addictive substances, emotional acceptance strategies), or avoidant (behavioral and cognitive avoidance strategies, use of addictive substances, “going along with symptom,” emotional outburst or resignation, social withdrawal, and doing nothing). Coding of coping strategies was informed by the perspective that the context in which a strategy is used is essential in order to inform judgements of whether it is problem-centered or avoidant.

So, for example, deliberately reducing activity would be regarded as a problem-centered strategy in response to manic symptoms, but as an avoidant strategy in response to depressive symptoms.

Analyses

When asked to describe what had been happening in their lives in the past six months, 21 participants spontaneously discussed experiencing at least one major life stressor (16 reported experiencing two or more). The average number of reported major life stressors was 1.59 (SD = 1.08), ranging from 0 to 3. Table 1 summarizes the major life stressors reported by participants.

As illustrated in Table 1, the most common categories of major life stressors reported by participants were becoming aware of an illness and death of a loved one. Among the eight participants who discussed becoming aware of an illness, six explained the stress associated with finding out that they had an illness, while two reported stress associated with finding out that a significant other had an illness. Life threatening and chronic illnesses (e.g., diabetes, Hepatitis C, HIV) were typically reported. Regarding this major life stressor, one participant stated: I found out I have Hepatitis C. So, I’m struggling with that and can’t handle that too. The past six months it’s been an up and down battle with that, and I don’t really like going to the doctor for that.

Several participants also discussed the death of a loved one within the previous six months. Of the eight participants who discussed this type of stressor, four indicated that a loved one had died suddenly as a result of an accident, while three reported losing a loved one due to an illness. As an example of the type of experience reported in this instance, one participant discussed the sudden loss of her adult son:

Transcripts were analyzed using an open-coding approach as a general framework (20), with a specific focus on information pertaining to stress and coping. First, transcripts were read and general categories of response topics were derived (e.g., major life stressors). Groups of text were placed within these categories, re-read and then re-grouped into subcategories (e.g., chronic stressors – housing instability). Responses were categorized as either major life events or chronic stressors based upon the participant’s appraisal of the event. While the culmination of daily hassles may also be a source of significant stress which may tax an individual’s overall coping ability, participants did not discuss these types of stressors during the initial baseline interviews. Evaluation of the appraisal was drawn from the participant’s statement that it was an important event, or from the emotional response that was observed during this discussion. Responses within each subcategory were reviewed for exemplary passages reflecting the various themes contained within the responses. Interview transcripts were independently analyzed and coded by two raters. In areas where there was disagreement in ratings, consensus was reached through discussion with the senior author who sometimes acted as an arbiter. Stressors were only coded into one category.

Raters also assessed the extent to which participants used coping strategies to deal with the reported stressors. Based on recommendations in the existing literature (21), coping responses were categorized as either problem-centered 224

Results Major Life Stressors

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Table 1. Categories of Major Life and Chronic Stressor Reported within 6 Months Number of Participants (n = 28)

% of Sample

8

28.57

Major Life Stressors Awareness of Illness Death of a Loved One

8

28.57

Loss of Housing

7

25.00

Legal Involvement

6

21.43

Criminal Victimization

6

21.43

Hospitalization

2

7.14

Ending of Relationship

2

7.14

Witnessing Crime

1

3.57

Loss of Employment

1

3.57

Psychiatric and Substance Abuse Issues

16

57.14

Compromised Living Conditions

15

53.57

Family Discord

11

39.29

Problems with Services

8

28.57

Chronic-Persistent Stressors

Financial Problems

7

25.00

Interpersonal Difficulties

5

17.86

Health Concerns

5

17.86

Legal Involvement

5

17.86

Side Effects of Medication

3

10.71

He was talking about getting this apartment and me and him could move in together. And then all of a sudden he was gone. They said it was an accident but he had a asthma attack under the water but I don’t know about that. He don’t know how to swim he wouldn’t have been in that much water….I felt shocked, I felt sick and I…I feel like I thought I…I thought I was gonna die.

The categories legal involvement, criminal victimization, and witnessing of crime reflect the reality that many participants were either arrested for allegedly committing a crime (or had family members who were arrested), or were victims or witnesses of a crime.

Among the six participants discussing legal involvement as a major stressor, five discussed an arrest that they had experienced. This was typically characterized as an instance in which they were targeted by the police due to their prior criminal history. For example: I was outside of my area during a sweep and the

officer that arrested me before for drugs recognized me and uh picked me up on attempted sale…. I did not try to sell no drugs and I knew the officer only picked me up because he knew me from my past history.

A wide range of experiences were reported with regard to criminal victimization (usually theft), but one participant reported being sexually assaulted by someone a roommate had let into her apartment. This same participant also discussed witnessing a murder in the prior six months, indicating that there was a high concentration of criminal activity in the “drug-infested” building where she lived: I’m coming home from the program this guy was running, running and he pushed me out the way, and I said watch it what are doing you jerk, and he turned around and looked at me and then I thought I saw fear in his face and just as I was coming into the house another boy pushed me and he came and he stabbed the guy and he killed him. And I was a witness to that.

Loss of housing was another major stressor reported by several (6) participants. In some cases, the loss was the result of external circumstances, while others reported being evicted due to alleged substance abuse.

Many of these participants had to subsequently move into shelters or other compromised living situations as a result of the loss of a more stable housing situation. One participant discussed how she lost her housing after the death of a relative that she cared for: He [relative’s son] got mad because I wouldn’t … I wouldn’t tell him … where all of her important papers was so he threw me out of the house. … I wound up in a shelter… I couldn’t believe, I mean, this was happening to me.

Other major losses reported by participants were the ending of a close interpersonal relationship (3) and loss of employment (reported by one participant). The participant whose loss of employment was characterized as a major life stressor stated: So I got this other new job at the end of November being a waiter at a catering place and I got arrested.

So I lost that job…that made me get depressed.

Chronic Stressors

All participants also spontaneously discussed experiencing at least one chronic stressor (21 reported experiencing two or more) in the previous six months. The average number of reported chronic stressors was 2.88 (SD = 1.42), and ranged from 1 to 6 (see Table 1). The most 225

An Examination of Stress and Coping among Adults Diagnosed with Severe Mental Illness

frequently reported chronic stressors were issues concerning psychiatric symptoms and substance abuse (15). These included concerns with persistent psychiatric symptoms (e.g., depression or auditory hallucinations) reported by three participants, and urges to use substances (reported by nine participants). One participant discussed the auditory hallucinations that he hears on a nightly basis: [I hear the voices] when I’m getting ready to go to bed… When I get by myself that’s when I hear them.

Reported almost as commonly, however, were concerns regarding compromised housing circumstances.

Types of problems reported varied depending on the participant’s type of housing situation (six discussed problems related to living in a shelter, three related to living with a roommate, five related to living alone, one discussed problems related to living with a family member). Many of the participants living in shelters had also experienced loss of housing as a major life stressor.

Participants living in shelters often discussed the stress associated with lack of privacy or the need to comply with curfews. For example: Getting up early in the morning. I mean…when you have bad weather, I don’t care what the weather is like you gotta leave. You gotta be out by eight, every morning except Saturday and Sunday. During the week you have to be up and out of there by eight and you are not allowed back ’til three. If I did not have anything do you with my time what would I do?

Participants living with roommates or independently also complained of lack of safety. One participant living in an independent apartment discussed his chronic fear of his community: I don’t like it there. I don’t feel safe. I feel like somebody is going to break my door in soon… sooner or later and probably shoot me down, I don’t know cause the neighborhood is like that.

Family discord and lack of family support were also commonly reported (11 participants). While four participants talked about the chronic stress associated with lack of contact with family members (due to a previous dispute or argument), seven participants discussed ongoing strife with family members. One participant discussed negative criticism from his father due to receiving psychiatric treatment: My mom and aunts are positive, but my dad in New York ain’t. And it was…a lot of stress has been going on in the family saying, you know you shouldn’t be collecting a check you shouldn’t be in a program, there’s nothing wrong with you…

226

A related category was interpersonal relationship problems, which were reported by five participants.

While one participant discussed the chronic stress associated with not having an intimate relationship, four reported currently being involved in an abusive relationship characterized by frequent arguments and sometimes physical violence. For example: He just called me names and followed me, stalked me and stuff like that but he stopped…when I left him…He doesn’t like the fact that I have a job he wants to be…he wants to be in charge of everything and I…I don’t need that.

Several participants (8) also discussed their struggle with trying to have their needs met by the social and mental health service systems as a chronic stressor. Five participants discussed their frustration and ongoing conflict in their attempt to obtain welfare benefits, SSI or other entitlements, while two participants discussed difficulty dealing with staff members at the shelter where they resided. In a related vein, seven participants reported that they experienced chronic financial stress as a result of not having enough money to pay for basic living expenses.

Related to the commonly reported major life stressor of finding out that one has an illness, five participants discussed the chronic stress associated with managing physical health problems, such as taking medication or coping with fluctuations in physical health.

For example: Yeah, so I have three illnesses to, trying to cope with that. But this diabetes is kicking me in the butt. It’s not normal, it won’t stay in this normal level. They want me to do dialysis, I refused that. I refused that because my mother was on dialysis and she died from that three months after she took the dialysis for diabetes.

Concerns with the side effects of medication were also discussed by three participants. One participant discussed the intense effects resulting from taking medication for Hepatitis C: … it messed me up. That must have had me transformed. Cause they tell me too, even the doctor said it will make you moody and transformed, you know.

But when I stop taking it, I just cry.

Related to the major life stressor category of legal involvement, five participants discussed the chronic stress associated with dealing with the legal system (such as probation, parole, or drug courts), either for oneself (3) or others (2). For example, one participant discussed the stress he experienced as a result of the need to keep returning to court:

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Well lately I’ve been going to court. Back and forth to court. I’ve been going back and forth to court… I used to be really depressed ’cause I didn’t want to go to jail and going constantly to court kept me, you know, kept me, like depressed.

Problem-Centered Coping

Participants typically reported using coping strategies in response to the stressors they reported experiencing in the past six months. Table 2 reports the number of coping strategies reported by respondents for each category and the specific types of coping strategies coded for each category. As can be seen in Table 2, problem-centered coping strategies were most commonly reported by participants. All but two participants reported using at least one problem-centered coping strategy, while the mean number of problem-centered strategies reported was 2.8 (SD=1.79) out of a range of 0-6. Problemcentered strategies fell into a number of broad groupings, including seeking professional help, problem solving, cognitive strategies and social support.

Seeking professional help was the most common class of problem-centered strategies reported in the sample (39 instances). Subtypes of this category included seeking professional mental health services (25), taking medication (9), and seeking medical treatment (5). As an example of the type of strategy reported in this category, one participant discussed the importance of meeting with her therapist in order to cope with the chronic stressor of family conflict: I just started crying. I left, you know and I came home and I felt really lonely, really like I had nobody, I have no friends... If I couldn’t talk to [individual therapist] I wouldn’t make it, but I make it every Thursday, that’s when I have individual therapy.

Cause I um, I…I feel like I have to be here for that.

Problem-solving was the second most common class of problem-centered coping strategies reported (24 instances). In this category, participants discussed taking concrete steps to deal with chronic and major life stressors, including: seeking employment (1), seeking housing/moving (7), filing a complaint to get necessary help (8), avoiding people that use drugs (2), hiring help (2), quitting smoking (1), stopping drug use (2), and ending a stressful relationship (1). For example, one participant discussed how he sought assistance from a mental health staff member in order to get entitlement checks from Welfare: and I kept on going back and forth down there taking my check and then I finally I got tired of going

Table 2. Categories of Coping Strategies in Response to Stressors Number of Participants (n = 28) Avoidant Coping (n = 21) Leaving/Avoiding StressfulEnvironment/Situation

7

Isolation

2

Substance Use

8

Acting out Aggressively

4

Neutral Coping (n = 14)

% of Sample 53.57%

32.1%

Acceptance

6

Ignoring

4

Cognitive Distraction

4

Problem-Centered Coping (n = 97)

85.7%

Professional Assistance Seeking Professional Mental Health Treatment

25

Medication

9

Seeking Medical Treatment

5

Social Support Support Groups (outside of program)

2

Support from Family/Friends

13

Cognitive Positive thinking/Self-help

10

Spirituality

9

Problem Solving Seeking Employment

1

Seeking Housing/Moving

7

Filing Complaints to Obtain Services

8

Avoiding People who Use Drugs

2

Hiring Help

2

Quitting Smoking

1

Stop Using Drugs

2

Ending Unhealthy Relationships

1

back…going down there so I …so I got [a supervisor in the Program], he went down and talked to my caseworker. He got my check, all three of my checks a couple days later. He went down there for me and they talked to my case worker and straightened me out and I got my check a couple days later, well all three of my checks a couple days later.

Another commonly reported method of coping was cognitive strategies, which included positive thinking (10), and spiritual coping (9). As an example of the type of strategy reported in this category, one participant discussed how he dealt with distress associated with not being employed: 227

An Examination of Stress and Coping among Adults Diagnosed with Severe Mental Illness

So I was feeling, like, messed up. Like why I’m here. I was like that, but then I got my book. I got an NA book and Just for Today book. And I just, like, when I read, like a Scripture or like a book half opens, whatever on that page, then I just, like meditate…

The last category of problem-centered coping responses reported by participants was seeking social support (15 instances). This category included receiving support from family members and friends (13), and non-professional support groups (2). For example, one participant discussed dealing with depression by seeking social support from a consumer-operated drop-in center: If it wasn’t for the Drop-In Center, I … I don’t… I don’t think I’d leave the bed Saturday or Sunday, I’d stay in the bed cause I get so depressed when I don’t come here [professionally-led treatment program].

Avoidant Coping

Avoidant coping strategies were the second most frequently reported coping strategy (15 participants reported using at least one avoidant strategy). The mean number of avoidant strategies reported was 1.22 (SD=1.21), which ranged from 0 to 4 Within this main category of avoidant coping, there were five subcategories reported by participants including, substance use (8), leaving/avoiding the stressful environment/situation (7), ignoring medical advice (4), acting out aggressively (4), and isolation (2).

The most frequently discussed avoidant coping strategy was substance use. Participants typically discussed using substances in response to being overwhelmed by major life stressors. For example, one participant explained how she started abusing alcohol after the death of an aunt she lived with and cared for: I started drinking trying to get it out of my mind.

Cause I…I didn’t want to think about it. Uh, so I just started drinking then you know, it was, you know, it was still there.

With regard to leaving stressful situations, participants often discussed walking away as a strategy that they used when they became overwhelmed by a particular stressor.

For example, one participant talked about how he would walk away whenever he became overwhelmed at the shelter where he was living: I leave a lot because I can’t take it. You know, I find, like right now it’s getting cold out, I don’t know what I’m gonna do, cause at one time I would leave and be walking about and stuff like that, because 228

that’s one of my favorite pastimes and it allows me to, you know to get away from the hustle and bustle and all the noise and all the people, cause I have a tendency…that I …when its too many people at the same time I get confused.

In a related manner, some participants discussed their use of isolation as a strategy to deal with unpleasant feelings. One participant discussed isolating himself in order to cope with depressive symptoms: There was times where I stayed in bed for weeks and weeks at a time and just got up to go to the bathroom … get back in bed and watch TV, I didn’t care, I really, really didn’t care.

Several of the participants (4) reported acting out aggressively in response to various types of stressors, particularly those involving difficulties within interpersonal relationships. Two participants explained that due to stressful relationships with their intimate partners, they became physically abusive as a means of coping with this frustration. One participant stated: I got into I just blacked out one day on my friend.

He put his hands on my the wrong way and I just blacked out and started beating him with my keys and they couldn’t control me the cops came and they couldn’t control me, so they admitted me here to Crisis and they sedated me.

Neutral Coping

Less frequently, participants reported using neutral coping in response to various types of stressors (9 participants reported using at least one neutral coping strategy). The average number of neutral coping strategies reported by participants was .37 (SD = .74), and included three subcategories: acceptance, ignoring and cognitive distraction.

Some participants discussed their use of acceptance to deal with situations in which they felt they were unable to make a change in the stressor at that particular moment. Describing how he dealt with an insulting interaction with a staff member at the shelter where he was living, one participant said: just let it go man, just trying to um, get somewhere, you know what I mean, get somewhere, maybe wherever I get I can help me out, you know what I mean?

Maybe one day I could confront that man …And I could ask him why did he say that to me?

Similar to acceptance, participants reported ignoring specific stressors that they lacked control over or were not capable of effectively changing. One participant

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Interaction between Stress and Coping

An additional concern of our study was not just to explore the types of stressors experienced by participants and the utility of specific coping responses, but also to better understand how coping varies according to the context of the stressor. Figure 1 illustrates the association between specific types of stressors and coping strategies.

As indicated in Figure 1, in contrast with chronic stressors, participants tended to use avoidant and neutral coping strategies more often in response to major life stressors. Furthermore, while more problem-centered strategies were used to deal with these stressors overall, many participants reported initially using avoidant strategies, such as drug and alcohol use, which often had destructive effects that were subsequently managed with more problem-centered strategies.

Notably, within some narratives (4), a pattern was revealed regarding the relationship between particular types of major life events, including sudden death of a loved one and loss of housing, and the use of coping strategies. Figure 2 demonstrates this temporal pattern involving substance abuse and the eventual enrollment in a treatment program in response to some major life stressors. For example, one participant poignantly discussed how the sudden death of her son led to a major depressive episode and an escalation in drug-use, followed by the initiation of enrollment in a treatment program: [referring to son’s death] Tragic. And um, I tried to kill myself. Put in the psych ward. The depression.

Tried to get hit by a car, cut my wrists. I wanted to be with him so bad. I wasn’t sleeping, I wasn’t eating.

I was going places where I had no business going, thinking that somebody would hurt me. I just got a bit better with it. My family was worried about me. I was, like, missing for, like, after that I was missing for two weeks. And my drug use was escalated…

First I was in the hospital. I was talking to [treatment program representative]. She kept telling me, well, she said something about this program here. And

Fig 1. Relationships between Stressors and Coping Strategies Percentage of Stressor

explained that, due to a history of verbal disagreements with his stepfather, he ignores any insulting comments that may frustrate him in order to circumvent potential altercations. Additionally, some participants reported using cognitive distraction (4) in order to mollify the emotional distress related to specific stressors. These participants discussed replacing particular thoughts concerning the stressor with more pleasant memories or optimistic thought processes.

80% 70% 60% 50% 40% 30% 20% 10% 0%

Major Life Stressors (N =46) Chronic Stressors (N=75)

Avoidant Neutral Problem-Centered Type of Coping Strategy

she wanted me to come. And I said, yeah, I’ll be there.

She said, if you don’t come I’m gonna come get you.

And I said, you don’t know me cuz if I don’t wanna do it, I’m not gonna do it. But I came. I came one day. I came two days. And then I didn’t come back. But then I thought about it. When I did come here, the positive thing I was doing, that was different from going sitting around trying to get drugs, or trying to find a date, or just sitting in somebody’s house watching TV. Or just doing nothing. I would stand on the corner freezing to death or whatever. Maybe it’s my turn once again to better myself. So I came back. And I asked for help.

Discussion The present study yielded several important findings regarding the relationship between stress and coping among adults with SMI. Consistent with previous studies, participants in this study reported experiencing a substantial number of stressors that can disrupt functioning and psychological well-being. Many of the participants reported experiencing disruptive major life events including the sudden death of a loved one, loss of housing and criminal victimization. Although we were unable to determine whether these experiences are unique to this population, the high frequency of these reported stressors is consistent with previous literature indicating persons with SMI may be at an increased risk of problems such as poor health and criminal victimization (6, 16).

Regarding chronic stressors, while a number of participants reported dealing with psychiatric symptoms and substance abuse issues, substandard living conditions, legal problems, pervasive family conflict and health concerns were also frequently discussed. Overall, this is consistent with the view that much of the stress experienced by adults with SMI is related to “institutionalized poverty,” 229

An Examination of Stress and Coping among Adults Diagnosed with Severe Mental Illness

Fig 2. Interaction between Major Life Stressors and Coping Strategies Death of a loved one

Loss of housing

Avoidant coping •Self-medicating •Substance Abuse

Problem-centered Coping •Seeking professional assistance

Enrollment in treatment program

and that psychiatric symptoms are only one aspect of what compromises functioning and well-being in this population (15, 22). Additionally, this finding corresponds to previous literature suggesting the family discord and lack of family support, which may affect psychiatric recovery and relapse, are prevalent among people with SMI (23).

With regard to coping, findings suggested that adults with SMI use problem-centered coping strategies most frequently in response to a majority of stressors. One of the most commonly reported problem-centered coping strategies, in response to both types of stressors, was the use of community mental services and obtaining support from treatment providers. Indeed, many of the participants relied heavily on their independent counselors, group members and case workers, emphasizing the importance of service providers in coping with particular stressors.

While avoidant coping strategies were infrequently applied, data suggested that these techniques, specifically substance use, are more likely to be used in response to major life stressors than to chronic stressors, and that the use of these strategies may have detrimental effects on psychiatric stability and community functioning.

Since our data allowed us to evaluate the sequence of events over time, it was also noted that there was a tendency for problem-centered strategies to also be employed in response to major life events, after the initial application of avoidant coping techniques.

One way to make sense of the impact of major life stressors and the tendency to use avoidant strategies in response to them is within the context of the literature on the “reactivity” to stress of persons with psychotic disorders (24). This research has found that persons with psychotic disorders tend to respond with greater sensitivity to daily stress than community controls.

Major life stressors, especially when unexpected, may be particularly damaging when considered in this light, and may place a considerable demand on coping resources that many may find difficult to manage.

Identifying the types of stressors and the manner in 230

which persons with SMI cope with these experiences provides several implications for the enhancement of community mental services and future research in this area. First, it is evident that persons with SMI experience a wide range of challenging stressors, including both major life events and chronic strains, and that these stressors may be inter-related and may affect psychiatric stability. On a basic level, service providers need to become aware that psychiatric symptoms are only one of the pressing issues experienced by people with SMI, and that it is essential to support clients in addressing their non-psychiatric concerns. Further, due to the potential effect these external demands may have on symptom severity and an individual’s ability to manage a psychiatric disability in conjunction with maintaining community functioning, more emphasis should be placed on decreasing possible exposure to these stressors. Focusing energy on ways to resolve these issues by addressing health, family problems and housing conditions may reduce the amount of chronic stress experienced by people with SMI and increase the effectiveness of community mental health services. Second, although many of the participants in this study used adaptive coping strategies such as problem-solving and reliance on social support, this may be a result of their involvement in treatment, particularly illness management services. Many adults with SMI apparently acquire the skills necessary to effectively cope with some stressors. It is essential that community mental health service providers collaborate with consumers in a process of mutual education, so that effective coping techniques in response to relevant chronic stressors and psychiatric symptoms can be identified and disseminated.

By listening to consumers, providers may identify new types of coping strategies that can then be incorporated into professionally-led interventions. Additionally, it may be beneficial for service providers to specifically emphasize coping with infrequent but predictable major life events (such as the death of a loved one) to increase the likelihood that adults with SMI will be better prepared to apply problem-centered coping strategies as opposed to avoidant techniques if these events occur.

In considering the relevance of the findings from the present study, it should be noted that, despite a relatively large body of quantitative research examining the use of coping strategies among persons with SMI (4), to our knowledge no previous study has explored this area using detailed narratives, and previous studies have made little effort to examine the context in which coping strategies are used or the sequence in which they are applied. The

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use of qualitative methods in the present study provides a comprehensive and unique understanding of the types of stressors and coping strategies experienced in this population which may consequently assist in the development of more nuanced individualized therapeutic interventions.

Some limitations of the present study should be noted. Since participants were selected from treatment programs in impoverished urban areas with a heavy concentration of substance use issues, and were required to be enrolled in an Illness Management program, the findings may have been affected, and the sample may not be representative of the SMI population in general.

Furthermore, coping strategies may have been influenced by the participantsâ&#x20AC;&#x2122; involvement in Illness Management and therefore may not be reflective of the strategies that might be reported by consumers who are not participating in such services. Moreover, since interviews generally took place in treatment settings, social desirability may have impacted participantsâ&#x20AC;&#x2122; responses.

Nevertheless, the findings of this study may be used as a foundation to further explore or create additional questions in this area that may be assessed on a quantitative level. Future research should examine the issue of stress and coping in a larger sample of adults with SMI, including those who are not attending treatment, in order to increase the generalizability of these findings. Since coping mechanisms may be connected with community functioning, it would be beneficial to examine additional interventions that may decrease the use of maladaptive coping strategies and enhance the psychiatric stability of adults with SMI. Finally, although this study suggested that some types of major life and chronic stressors are frequently reported by adults with SMI, due to our lack of a community comparison group we are unable to discern whether these stressors and coping responses are also common among persons without psychiatric disabilities. Further exploration investigating the prevalence of such stressors and the coping strategies applied in response to them among other populations, especially those of similar SES, is warranted.

Acknowledgements Preparation of this manuscript was supported by a grant from the National Institute of Mental Health (K23MH066973) given to Dr. Philip Yanos.

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Mental health, social mirror. New York: Springer, 2007: pp. 407-433.

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17. Phillips LJ, Francey SM, Edwards J, McMurray N. Stress and psychosis: Toward the development of new models of investigation. Clin Psychol Rev 2007; 27: 307-317.

18. Mueser KT, Corrigan PW, Hilton DW, Tanzman B, Schaub A, Gingerich S, Essock SM, Tarrier N, Morey B, Vogel-Scibilia S, Herz MI. Illness management and recovery: A review of the research. Psychiatr Serv 2002; 53: 1272-1284.

19. Spradley JP. The ethnographic interview. Belmont, Cal.: Wadsworth, 1979.

20. Strauss A, Corbin JM. Basics of qualitative research: Grounded theory procedures and techniques. Thousand Oaks, Cal.: Sage, 1990.

21. Yanos PT, Knight EL, Bremer L. A new measure of coping with symptoms for use with persons diagnosed with severe mental illness.

Psychiatr Rehabil J 2003; 27: 168-176.

22. Draine J, Salzer MS, Culhane DP, Hadley TR. Role of social disadvantage in crime, joblessness, and homelessness among persons with serious mental illness. Psychiatr Serv 2002; 53: 565-573.

23. Barrowclough C, Hooley JM. Attributions and expressed emotion: A review. Clin Psychol Rev 2003; 23: 849-880.

24. Myin-Germeys I, Peeters P, Havermans R, Nicolson NA, DeVries MW, Delespaul P, Van Os J. Emotional reactivity to daily life stress in psychosis and affective disorder: An experience sampling study. Acta Psychiat Scand 2003; 107: 124-131.

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Isr J Psychiatry Relat Sci - Vol 47 - No.3 (2010)

Supervision and the Process of Negotiating Recovery Hanoch Yerushalmi, PhD Department of Community Mental Health, Faculty of Social Welfare and Health Sciences, University of Haifa, Haifa, Israel

ABSTRACT This article suggests borrowing the concept of “negotiation” from relational psychoanalysis for rehabilitation treatment of consumers who suffer from severe mental illness and its supervision. This suggestion is likely to contribute to the rehabilitation field, particularly in light of the recent developments in the term “recovery,” which have offered it new opportunities and challenges.

Senior professionals within the rehabilitation field of mental health face the substantial task of accompanying and enriching other professionals in their day-to-day work, and promoting new and inexperienced trainees in the development of their own professional identities. This task requires the broadening and deepening of these professionals’ skill and ability to accompany those who suffer from chronic and severe mental illnesses, and to support them along their journey to live a life filled with as much meaning and content as possible.

This is a complicated and challenging task that requires command over the wide variety of knowledge that composes the rehabilitation field, as well as an ability to manage interaction that is permissive, open, secure and respecting of the trainee’s boundaries. In light of all this, there is no doubt that the field of supervision in the rehabilitation of mental health consumers has neither received enough, nor suitable, attention, and has even at times been ignored by researchers (1). There seems to be a further important reason for the insufficient attention given to developing supervision in the rehabilitation field. The lack of basic and reliable budgeting of rehabilitation projects seems to cause a scarcity in updated academic and professional training programs, which are those that implement supervisory methods and train

professionals in the use of efficient intervention.

The specific characteristics and challenges of mental health rehabilitation work, which include fighting despair and helplessness, make the supervision process even more complicated than that in other therapeutic contexts. In order to identify and develop some of the critical and unique components of rehabilitation supervision which need to be addressed, it is necessary to first introduce and consider an important term in the field, which today has a unique position in professional and empirical literature: Recovery. This is an important topic within mental health rehabilitation, whose development signals a change in the rehabilitation approach and thus has direct ramifications on the examination and evaluation of the supervisory process. I propose to briefly examine this term and to suggest possible ramifications of assimilating it within supervision and training of new rehabilitation professionals.

Recovery in Rehabilitation Both in a publication of the Department of Health and Human Services (DHHS), as well as by a committee dealing with issues of Mental Health set up by the President of the United States (called “The President’s New Freedom Commission on Mental Health’s Final Report, Achieving the Promise: Transforming Mental Health in America”) it has been asserted that the idea of “recovery” from severe mental illness has started to play a central role in the policy and practice of the Public Mental Health Services in the USA (2). Although this topic has received much momentum in the discourse of the rehabilitation field, it has remained difficult to reach an agreed upon and accepted definition of the term and its principal facets, when referring to severe mental illnesses (3, 4).

It is becoming clearer, both to researchers and practitioners in the rehabilitation field, that there is a problematic lack of agreement among academics regarding the development of severe and chronic mental disorders and their long-term implications on their sufferers (5). Accumulated

Address for Correspondence: Hanoch Yerushalmi, PhD, Clinical Psychologist and Associate Professor, Department of Community Mental Health, Faculty of Social Welfare and Health Sciences, University of Haifa, Haifa, 31905 Israel. hyerush1@univ.haifa.ac.il

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research shows full or partial recovery in 25% to 65% of each patient sample. In such cases “recovery” was historically defined as “an improvement in the symptoms and disabilities associated with the disorder to a level in which they no longer interfere in day-to-day functioning and enable the consumer to widely take part in personal, social and professional activities to a level that would be considered normals”. These findings show that about a quarter to two-thirds of those diagnosed with a psychological disorder will recover from its symptoms and influences (6, 7).

Lachman (8) identifies three separate stages in the development of the understanding of “recovery,” as reflected in academic literature. According to him, the first stage rests on the influence of the deterministic approach that developed along side the medical model/way of thinking. During this stage the widespread opinion was that mental disorders (and particularly schizophrenia) are illnesses that have a prognosis of gradual functional deterioration, with little chance of recovery. The second stage viewed recovery as a process, inspired by de-institutionalization revolution, pro-human rights movements and the development of new therapeutic drugs. During this stage the wide variety and disparity of psychological disorders was exposed and both the disorder and the recovery from it were seen as continuous processes. The third stage focuses upon individualism, and places the individual at the center of his/her own recovery.

The main contribution to this shift, in which the subjective and personal definitions of those suffering from the severe disorders define recovery, was the mental health consumer movement. Recovery as proposed by this movement does not involve remission of symptoms or disabilities, nor does it involve the return to normal functioning. This approach views the disorder as only one aspect of the individual. It proposes that, unlike physical illnesses, individuals can see themselves recovering even when the illness still influences them. Recovery in this way refers to the overcoming of the problems caused as a byproduct of the illness, including: poverty, problematic housing, social isolation, unemployment, loss of social status and roles, loss of sense of self and purpose in life, and influences of forced treatment and hospitalization as experienced by the patient. Getting over these and gaining control over one’s life are defined as recovery. Due to the traumatic influences involved in such cases, it is possible to see the great reward in gaining control over the disorder and regaining control over one’s life in general (9, 10).

The Center for Psychiatric Rehabilitation at Boston

University thus developed a working definition for the term recovery by analyzing narratives and opinions of those from the consumer movement. They defined recovery from a mental illness as: “the deeply personal process of changing one’s attitudes, feelings, perceptions, beliefs, roles, and goals in life.” It was further conceptualized as: “the development of new meaning and purpose in one’s life, beyond the impact of mental illness.”

Lachman (8) summarizes some central principles for achieving recovery, according to the different perspectives presented: self direction of those recovering; placing those recovering at the center of rehabilitation work; providing strength; taking a holistic approach to recovery; viewing recovery as a non-linear process that is based on strength and energy; providing peer support; providing respect, responsibility and hope. These comprehensive changes in the understanding of both the development of severe mental illnesses and the recovery from them have contributed to seeing the term recovery as a central goal for those suffering from such illnesses, for their social, economic, and political repercussions, as well as for professionals helping them reach their personal goals. Yet, it seems that these developments have mainly influenced rehabilitation research, but not practice. Those dealing with practical work have continued to structure their efforts around trying to avoid and fight relapses and deterioration, and have not formed new and appropriate approaches to suit these theoretical and empirical developments (11). It seems that there are still many communication challenges in the field of recovery from severe mental illness. For the concept of negotiation to be fully integrated within the professional rehabilitation community, a basic change in their own, and society’s, perceptions and attitudes needs to take place. The idea that people who suffer from serious mental illnesses are able, and have the full right, to make decisions concerning their destinies and the way they manage their life, has to be accepted. Only when these perceptions and values are embraced can the idea of negotiation be fully understood and implemented.

Due to the centrality given to the term and the hope it entails for consumers and professionals, it seems that rehabilitation supervisions need to examine creative ways for the development of trainees’ abilities to discuss and promote personal and specific definitions of recovery, with and alongside their consumers. In order to advance this goal, I propose to borrow a term from Relational Psychoanalysis – “negotiation,” and to use it as a mediating concept for supervision in the field, in an effort to advance mental health rehabilitation.

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Supervision and the Process of Negotiating Recovery

Negotiation The term negotiation in relational psychoanalysis has become more and more dominant in describing something deep and basic in the therapeutic process, as well as a term explaining the therapeutic action that generates change. Writers from a relational approach do not designate the term only for the therapeutic relationship, and explain that negotiation is a basic factor in every human interaction. From the beginning of development there is an ongoing process of negotiation between the child and its caregiver surrounding the realization of its deep interests and basic needs. Such negotiation allows for the essential establishment of the developing identity of the child (12). Beyond such negotiation, in every encounter with another, explains Pizer (13), we also engage in ongoing negotiation of expressing ourselves, our ability to convey spontaneity and to realize self-fulfillment within a secure, respectful and mutual relationship.

Despite the importance of negotiation within each relationship, the term is also unique and characteristic of the therapeutic one, explaining a central part of the ability to form a beneficent therapeutic relationship and elicit change. Negotiation is seen to explain the process of connection between two individuals building a therapeutic relationship from two very different positions, with a great disparity in power and perspective. Today, more writers see the essence of therapeutic interaction as a process of negotiation aimed to advance the ability of one of them to get over his/her life problems (14).

Such active negotiation takes place between the counselor and consumer, as is summarized by Bass (15): (A)n element of ongoing assimilation and accommodation to the needs, rhythms, sensibilities, and sensitivities of the other, in much the way that all personal relationships evolve through trial and error and the continual honing of mutual responsiveness that develops over time (p. 336).

Negotiation within therapeutic interaction is an intrapsychic, inter-personal and inter-subjective process (13).

It is an intra-psychic process since each of us, according to Pizer, needs to find compromise between two opposing internal tendencies: to live the moment and to live trapped in the chains of the past. In our attempt to form an interaction with the other we choose to what extent we will let the past control our lives and our actions, and how much we will distance past shadows from present interactions. It is an inter-personal process since we need to continuously organize and arrange, with our counter234

part, questions of security, passion, anxiety, power, comfort, fairness, and so on, that arise between us. Without finding a way to organize all these we will struggle to form a real relationship with the other side. It is an intersubjective process since we need to constantly influence the otherâ&#x20AC;&#x2122;s perceptions and experiences from the first moment of acclimation, and, in this way, to be influenced by others, in order to build our personalities.

This term, introduced by the relational approach of psychoanalysis, reflects a strengthening position among therapists that emphasises mutuality between the therapist and the client, despite the possible differences in their personality organization and their level of dependency upon the other. This mutuality does not imply symmetry but does definitely suggest giving a significant platform for the opinions, perspective and values of the client, similar to that of the therapist. Such mutuality and greater equality in authority and responsibility between therapist and consumer is expressed in the term negotiation. The management of such interaction, in which there is giving and receiving, insistence and concession, exchange of ideas and assessment of truths and definitions regarding the inter-personal reality of each of the participants, reflects important similar changes in the social and therapeutic values of our time.

Rehabilitation and Negotiation The term negotiation seems particularly relevant to the rehabilitation field of work, in its ability to describe the interaction between the rehabilitation professional and the consumer, whereby the professional acts alongside consumers, in order to reduce their suffering and strengthen their subjective feelings of a sense of meaning and positive sense of self. The relevance of this term to the field is primarily due to the importance placed on the involvement and recruitment of the consumer in the task of personal development and relief of suffering.

Obtaining cooperation from the consumer, and even eliciting excitement regarding the joint task, is critical in order to achieve important rehabilitation goals.

Yet, further to these general reasons, negotiating with the consumer is also relevant to the field on other grounds. Some of these are to do with the development of recovery as a central term in the rehabilitation field, and its assimilation into the professional work. I wish to make a distinction between two kinds of rehabilitation services: a. those that deal with supporting and sustaining consumers suffering from serious mental illnesses in their life

Hanoch Yerushalmi

tasks – services which are basically covered by the act of rehabilitation and that constitute a major portion of the efforts seen in rehabilitation (such as support for housing, work, studies, etc.); and b. those that include professional treatment, either for individuals or in groups. This distinction is particularly evident in Israel, where these two kinds of services are not necessarily provided by the same organization, bringing about difficulties due to lack of efficient coordination. Negotiation seems to better suit the treatment services provided in rehabilitation, which include exploring difficulties, finding coping strategies and achieving a personal sense of recovery.

Due to the growing tendency to integrate cognitivebehavioral treatment methods within rehabilitation agencies, it may be relevant to point out that the principle of negotiation may also be implemented in these approaches. Negotiation is a natural human behavior, employed by every person with basic social skills, and can definitely be used in the service of the cognitivebehavioral approach. Borrowing treatment strategies from other therapeutic methods seems relevant to rehabilitation treatments, in the same way that other approaches are advised to borrow significant strategies from the rehabilitation field.

I shall now list a number of central reasons for the importance of negotiation in the professional encounter between counselor and consumers: 1. The counselor can help consumers build and define their recovery aims with the help of negotiation: to determine what they aim to accomplish in their recovery process.

This is an important process as it assigns targets for the joint work between counselors and consumers, in which consumers declare their ambitions and wishes from themselves and the world around them, as well as how they would like to achieve a sense of fulfillment and meaning in their lives. Yet, the involvement of the consumer in mutual negotiation is important not just to identify consumers’ real wishes and needs, but also to elicit their motivation and excitement at the prospect of developing themselves in a way that they consider significant.

This process requires negotiation as the counselor proposes different perspectives and points of view to those suggested by the consumer, taken from past encounters with him/her. These are presented to consumers as possible alternatives to their presently declared aims and wishes. This allows consumers to develop and consolidate long-term personal goals with the help of on-going dialogue with their counselors, who present

and remind them of different parts of themselves that appear at different points in time and in different contexts. It is the long-term aim for recovery that will guide both the consumer and the counselor regarding which steps need to be taken in order to achieve a sense of meaning and direction in the consumer’s life, and what are the intermediate goals that need to be aimed for in order to reach this important target.

2. It is important to develop the negotiation abilities regarding personal needs and interests of those who have experienced repeated hospitalizations or suffer from severe illnesses, as for many of them these abilities are often damaged, like many other social skills.

As mentioned above, the ability to negotiate is complicated, involving both sensitivity and attunement to the other, with an attempt to understand the other’s message, as well as the ability to convey and communicate one’s own basic needs and feelings. This skill is likely to be weakened, if not completely undermined, due to the sense of helplessness and trauma from hospitalization and the tough surroundings experienced by those suffering from severe chronic mental illness.

Both hospitalization and an on-going sense of social alienation prevent those dealing with severe illness to practice and use their negotiation abilities on an ongoing basis. In such cases these important skills weaken and at times are almost completely deserted.

3. The ability to negotiate elicits an inter-subjective experience of influence on others in each individual, and thus builds a sense of agency that is so crucial for the strengthening and establishment of the self.

A sense of agency is founded upon a basic belief in one’s ability to influence the world and, therefore, to be of value to significant others (16). Stern (17), who researched the development of the “self ” in children, explains that the experience of agency, alongside the ability for sensitivity and a sense of continuity, are crucial components at the heart of the establishment of a sense of self as a separate being, that is both continuous and has clear boundaries. Thus, a sense of agency has been marked by relational literature as crucial in order to experience one’s humanity and vivaciousness. Those who have suffered long-term and severe illnesses are likely to experience an unstable and damaged sense of agency, and it is, therefore, crucial to help develop this ability in them, in order to establish their sense of self. If consumers manage to experience, once again, that they have an influence on their surroundings, that they have 235

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a voice and that they are the “author of [their] actions” (18, p. 180), then they will have a stronger and more stable sense of meaning.

4. In order to form a personal sense of recovery, consumers need to hold hope for their future and their ability to achieve and establish a personal sense of welfare (19). Yet, at times they may fluctuate between a deep sense of ongoing despair, and unrealistic, grandiose, wishes, as with every individual who suffers deep and ongoing hardship (20, 21). It is possible to help consumers regulate their hope in a complicated and sensitive process of negotiation, between themselves and the empathic counselor, who becomes witness to the vicissitudes of the consumer’s hope and despair. When consumers tend towards either extreme helplessness or unrealistic, grandiose hope, the counselor reminds them of their perception and beliefs at other times, in order to regulate the shifts in hope. In this way there is ongoing negotiation regarding consumers’ hopes, thus decreasing the large shifts they may experience.

5. The promotion of negotiation between consumers and counselors strengthens consumers’ beliefs in their ability to stand up for themselves and their opinions, and to succeed in doing so.

A sense of success in fighting for one’s opinions will strengthen consumers’ assertiveness, a trait that is often hidden and suppressed due to a repeated sense of defeat, which they may experience. The release and reinforcement of assertiveness is crucial for success in dealing with life’s challenges, and is essential for returning to the wanted path in the consumers’ family and professional life.

6. Negotiation between two people is a process that strengthens an inter-personal relationship: a joint task of two people holding a dialogue between them, with a mutual aim of defining recovery and achieving it.

Through negotiation there is mutual learning of the other’s characteristics and sensitivities, and searching for ways to express oneself to that same other. Similarly, negotiation forces mutual engagement and emotional investment with the other, even if at times this investment includes anger or frustration. The range of feelings invested lead to a significant relationship (22), something which is often very difficult to achieve for someone suffering from a severe chronic mental illness, who has often experienced rejection from his/her surroundings.

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Negotiation in Rehabilitation Supervision The interaction between the supervisor and supervisee in rehabilitation supervision needs to be, to a certain extent, parallel to that between a counselor and consumer in the rehabilitation process, in order to act as a model for identification and imitation by the trainee in his/her rehabilitation work. Such a parallel between the rehabilitation process and supervision does indeed take place on many levels: the task in both involves eliciting a change in values, positions and perspectives for the purpose of personal growth. While such growth for consumers implies the development and strengthening of the self, for trainees it includes the building and confirmation of a consolidated professional self.

Similarly, among other parallels between rehabilitation and supervision, negotiation also needs to take place between the two interacting participants in both cases.

Such negotiation is crucial to the rehabilitation process and therefore cannot be absent from supervision in the field. From such a supervision, supervisees can internalize attitudes, perspectives and behaviors that can later be used in their own rehabilitation work.

What negotiations need to take place in supervision?

First, this negotiation has to be a process that accompanies and enhances the formation of optimal conditions for professional growth. Of course, it is not only supervision that enables professional growth; there are also the direct encounters with consumers and many rehabilitation challenges, as well as other individual and internal processes. Nonetheless, the supervisory interaction acts as a very important component in this growth. Professional development in supervision is similar to other processes of human development and ripening: it is a process that takes place within the intersubjective field, in which individuals see themselves, and are influenced by the way others view them, from different angles at each given moment. These changing perspectives vary in accordance with the surroundings, the context and the role which the individual is fulfilling at that given moment (23). Through this process counselors learn to rely less on external guidance and theory, and to use internal direction, to regulate their emotional reactions and level of involvement, and to form better integration between their professional and personal selves (24, 25).

The changing requirements of trainees, matching their changing personal and professional develop-

Hanoch Yerushalmi

ment as rehabilitation counselors and the changing supervisory contexts, imply for supervisees a need to be engaged in an ongoing negotiation with supervisors, who provide the environment in which the trainees are expected to grow. Even the most attentive and needsoriented supervisor requires such a dialogue with his/ her trainees in order to follow the changes and development of their needs.

I shall hereby detail a number of issues around which negotiation, between supervisor and trainee, is recommended: Understanding and interpreting consumer aims regarding recovery: What meaning can be attributed to the dreams consumers place on their future and on the possibility of escaping the continuous cycle of suffering that accompanies their illness? How can the way in which consumers define their recovery be understood and interpreted? What is the meaning of organizing a plan of action and rehabilitation process with a specific patient? How can efficient and precise negotiation be held when defining recovery and consumer aims according to the consumer’s needs and perspectives? How does the consumer view the ways in which his/her goals can be achieved? Within the supervisory context, the presentation, negotiation and dialectics surrounding the differing perspectives in answering these questions, which differ between supervisor and trainee due to their different subjectivities, allows for a more structured consideration of the goals of rehabilitation and their achievement.

The framework and ground rules of supervision: How are the supervisor and supervisee going to manage their professional encounter? What is expected of each of them? What are they promising to avoid, for the benefit of the other? Thus, for example, they are likely to negotiate whether the supervisee will bring notes from meetings with a consumer, or whether he/she will raise dilemmas and professional issues he/she wishes to discuss; whether the supervisor will tell of his/her experiences in similar situations; how they will deliver feedback; what will happen when a supervision meeting is cancelled, and other administrative decisions regarding setting and expected behavior from each participant.

The professional and personal boundaries between the supervisor and supervisee: How much can supervisory content draw on the personal life and world of the trainee, even if these do not immediately touch upon the rehabilitation work? How much does the supervisor share about him/herself and his/her personal life? How much can the participants hold a personal interaction

that is not only professional? In cases where the supervisor has other roles within the organization in which the supervision takes place, it is possible to negotiate the expected boundaries between these different roles.

The different perceptions of reality between supervisor and supervisee: How can the complicated inter-personal realities between different consumers and between consumers and counselors, etc., be understood? What is the organizational reality in which the rehabilitation service is functioning? The perception of reality is influenced by the personal organization of each individual, their needs and past experiences, and therefore it is always biased in one direction or another. Negotiation on such topics can always enrich the understanding of the complex inter-personal and organization reality.

The meaning attributed to content regarding the interaction between the trainee and consumer; reaching an agreement regarding the meaning of the consumer’s behavior and the role of the trainee in his/her rehabilitation: What meaning can be attributed to the consumer’s narrative of his/her past and present life?

What meaning can be attributed to the events defining the professional relationship between the trainee and consumer? How can the interaction between them be interpreted and understood? What is the significance of the inter-personal events between the trainee and supervisor? How can the supervisory interaction and the feelings it arouses be interpreted and understood?

Whether joint values can be reached: values regarding attitudes to mental health and illness, societal and social norms, the appropriate level for professional involvement in the lives of those suffering from severe illness, the level of regression that is plausible to experience in rehabilitation, when is it legitimate to act forcefully towards someone suffering from a mental illness, and other professional, personal and social values. At times it is hard to agree on a range of personal and social values, yet it is still possible to reach some agreement and in other cases to agree to disagree.

Examining the meaning of different symbols present in the supervisory discourse: symbols that are common to members of the same society to which both the supervisee and consumer belong, or those that belong specifically to one participant, thus influencing the interpretation given to different situations. For example, the supervisor and trainee may negotiate the meaning of a national holiday for consumers in a certain rehabilitation context – what they attribute to this holiday, and what is the significance of making reference to this holiday in the 237

Supervision and the Process of Negotiating Recovery

context of their rehabilitation. A different discussion and negotiation can take place between supervisor and supervisee regarding the symbolic significance of a particular word that describes a specific reality for each of them.

For example, a specific word chosen to describe in their unique supervisory “language” the influence of the organizational manager on the rehabilitation team and consumers. Meaning is attributed to this word through ongoing negotiation between the supervisor and trainee.

Summary The present article introduced a new term, originating from relational psychoanalysis, which may contribute to the development of rehabilitation supervision models: negotiation between two participants. The paper first presented the term within the counselor-consumer relationship, as a way to advance the independent development of consumers, and also of counselors, through mutual learning of how to express basic needs and identify those of the other. The negotiation has to be respectful and mutual, as much as possible, it order to fulfill its purpose and to allow for personality growth in consumers, and professional growth in counselors. Later in this article, it is proposed that the principle of negotiation should be implemented within the supervision of counselors who treat rehabilitation consumers, as it offers a role model that will enhance their professional relationships. Such negotiation will advance mutuality in both professional interactions, will contribute to the reduction of the troubling differences in power, and thus will promote the goals of rehabilitation in the mental health field.

It is important to note that the primary theoretical position presented in this article examines the implementation of a concept taken from a different therapeutic approach into the rehabilitation field. This concept has been broadly and inclusively implemented both within rehabilitation treatment and supervision, since it seems inadvisable to separate between the two.

Undoubtedly the ideas presented need to be further developed theoretically, as well as systematically and empirically investigated or studied through case studies.

Only a proper validation of these ideas through research can verify their effectiveness.

It must also be mentioned that a positive development in mental health rehabilitation is not only contingent upon the advancement of professional tools, but is also even more dependent upon the societal ability to create the elementary conditions needed for the recov238

ery of those who suffer from long and severe mental illnesses. It is society’s responsibility to create essential and realistic opportunities for such consumers and to enable their integration within the community.

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2. Davidson L, O’Connel MJ, Tondora, J, Lawless M, Evans FC. Recovery in mental illness: A new wine or just a new bottle. Professional Psychol: Research and Practice 2005; 36: 480-487.

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11. Farkas M. The vision of recovery today: What it is and what it means for services. World Psychiatry 2007; 6: 4-10.

12. Slavin MO. An evolutionary biological-postmodern dialogue about sex and gender. Psychoanal Psychol 1999;16:565-587.

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14. Greenberg JR. Discussion. Contemp Psychoanal 1992; 28: 277-285.

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by Joyce Slochower. Psychoanal Dial 1996; 6: 361-378.

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17. Stern D. The interpersonal world of the infant. New York: Basic Books, 1985.

18. Levinson DM, Atwood G E. A life of one’s own. Progress Self Psychol 1999; 15: 163-181.

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20. Kanwal GS. Hope, respect, and flexibility in the psychotherapy of schizophrenia. Contemp Psychoanal 1997; 33: 133-150.

21. Safran JD. Faith, despair, will, and the paradox of acceptance. Contemp Psychoanal 1999; 35: 5-23.

22. Benjamin J. The rhythm of recognition. Psychoanal Dial 2002; 12: 43-53.

23. Ohlen J, Segestern K. The professional identity of the nurse: Concept analysis and development. J Adv Nurs 1998; 28: 720-727.

24. Ronnestad MH, Skovholt TM. The journey of the counsellor and the therapist: Research findings and perspectives on professional development. J Career Dev 2003; 30: 5-44.

25. Yerushalmi H. Mutual influences in supervision. Contemp Psychoanal 1999; 35: 415-436.

‫מסקנות‪ :‬שיתוף פעולה עם צרכנים של שירותי בריאות‬ ‫הנפש בתהליכי הערכה ושיפור של שירותים מכווני החלמה‬ ‫חשוב ביותר במסגרת המאמץ לפתח שרותים מכווני החלמה‬ ‫בבריאות הנפש‪.‬‬

‫תהליך זה מושפע מאינטראקציות בין הפרט‪ ,‬מחלתו וסביבתו‪.‬‬ ‫כמו כן‪ ,‬על מודלים אלו לקחת בחשבון גם את השפעתן של‬ ‫המוטיבציות וההחלטות של הפרט עצמו‪ ,‬אשר משפיעות על‬ ‫מעורבותו בתהליך השינוי‪ .‬הכותבים מסבים את תשומת הלב‬ ‫לצורך בהמשגה עשירה יותר של תהליך ההחלמה ממחלת נפש‬ ‫עם ההתקדמות המחקרית בהבנתו‪.‬‬

‫מטרתה של מדיניות בינלאומית בתחום בריאות הנפש‬ ‫הינה למקד שירותים הניתנים בתחום זה בהתאם ל"גישת‬ ‫ההחלמה"‪ .‬משמעותה של "החלמה" בבריאות הנפש הינה מצב‬ ‫שבו ניתן לפתח משמעות ומטרות בחיים‪ ,‬ללא תלות במצבו‬ ‫הנפשי של המתמודד ובקיומם או בהיעדרם של סימפטומים‬ ‫הקשורים במחלת נפש‪ .‬במאמר זה מתוארת ההתקדמות‬ ‫העכשווית בשירותי בריאות הנפש בתחום ההחלמה שמצביעה‬ ‫על כך כי מדיניות התומכת בגישת ההחלמה משלבת בתוכה‬ ‫ראיות אמפיריות וקליניות גם יחד‪ .‬המאמר הנוכחי משרטט‬ ‫אתגרים מרכזיים בהערכת גישת ההחלמה‪ ,‬וכן מטרות ויעדים‬ ‫מרכזיים הכוללים סטנדרטים של איכות‪ ,‬סגנונות אינטראקציה‬ ‫של צרכן מול נותן שרות ועדויות של אמונה ושיח‪ .‬מאמר זה‬ ‫מדגיש את הצורך בגישה חדשה בהערכת השירותים בתחום‬ ‫בריאות הנפש‪ ,‬אשר משלבת השגה של תפקידים חברתיים‬ ‫ומטרות אישיות‪ .‬לגישה זו יתרונות הן בניסויים קליניים והן‬ ‫במתן שירותים‪.‬‬

‫בחינה של לחץ והתמודדות אצל מבוגרים‬ ‫המאובחנים עם מחלה נפשית קשה‬

‫מדידת החלמה בשירותי בריאות הנפש‬ ‫מ' סלייד‪ ,‬לונדון‪ ,‬אנגליה‬

‫יישום מודלים שלביים בהחלמה מהפרעות‬ ‫נפשיות קשות‪ :‬תרומות ומגבלות‬ ‫ל' דיווידסון‪ ,‬ד' רועה‪ ,‬ר' אנדרס־היימן פ'רידג'ווי‪,‬‬ ‫ניו הייבן‪ ,‬ארצות הברית‬

‫חקר נושא ההחלמה בתחום בריאות הנפש גדל והתעצם‬ ‫בשנים האחרונות‪ .‬במסגרת תחום ההחלמה‪ ,‬רווח בשנים‬ ‫האחרונות המחקר על אודות מודלים לשינוי בתהליך ההחלמה‪.‬‬ ‫לפי מודלים אלו‪ ,‬תהליך ההחלמה נחלק לשלבים נפרדים אך‬ ‫עוקבים‪ ,‬אשר באמצעותם האדם מתקדם ממצב של הצפה‬ ‫ופסיביות לעבר התמודדות פעילה עם מחלתו והשפעותיה‪.‬‬ ‫במאמר הנוכחי מוצגת סקירת ספרות בתחום ההחלמה ונבחנות‬ ‫התרומות והמגבלות של מודלים שלביים לשינוי הקיימים‬ ‫כיום‪ ,‬וזאת על מנת להבין טוב יותר את תהליך ההחלמה‬ ‫ממחלת נפש‪ .‬מסקנה מרכזית העולה ממאמר זה נוגעת לכך כי‬ ‫מודלים של שלבי שינוי צריכים לשקף ביתר דיוק את תהליך‬ ‫ההחלמה‪ ,‬אשר אינו לינארי ביסודו‪ ,‬תוך התייחסות לעובדה כי‬

‫‪239‬‬

‫ס' רובילוטה‪ ,‬א' קואטו‪ ,‬פ"ט יאנוס‪ ,‬ניו יורק‪ ,‬ארצות הברית‬

‫המחקר הנוכחי בחן סוגים של גורמי לחץ משמעותיים בחיים‬ ‫וגורמי לחץ כרוניים אשר חווים אנשים עם מחלת נפש קשה‪,‬‬ ‫וכן אסטרטגיות להתמודדות אשר נעשה בהן שימוש כתגובה‬ ‫אליהם‪ 28 .‬מבוגרים המאובחנים עם מחלת נפש קשה השלימו‬ ‫ראיונות איכותניים‪ ,‬שהתמקדו בלחץ ובהתמודדות בששת‬ ‫החודשים האחרונים‪.‬‬ ‫המשתתפים דיווחו על כך שחוו מאורעות משמעותיים אשר‬ ‫שיבשו את חייהם‪ ,‬ובהם מוות פתאומי של אדם אהוב‪ ,‬אובדן‬ ‫מקום מגורים ונפילת קורבן לפשע‪ .‬כמו כן המשתתפים דיווחו‬ ‫על גורמי לחץ כרוניים כגון סימפטומים פסיכיאטריים‪ ,‬שימוש‬ ‫לרעה בחומרים פסיכואקטיביים‪ ,‬תנאי מגורים ירודים‪ ,‬בעיות‬ ‫משפטיות ודאגות בריאותיות‪.‬‬ ‫התוצאות מעידות על כך שאנשים המאובחנים עם מחלת נפש‬ ‫קשה משתמשים לרוב באסטרטגיות התמודדות שהן ממוקדות‬ ‫בעיה כתגובה לרוב גורמי הלחץ‪ ,‬כולל מאורעות משמעותיים‬ ‫בחיים‪ ,‬על אף שהשימוש הזה נעשה רק לאחר יישום ראשוני‬ ‫של אסטרטגיות התמודדות של הימנעות‪.‬‬ ‫מחקר עתידי צריך לבחון אם גורמי הלחץ המזוהים ואסטרטגיות‬ ‫ההתמודדות שנעשה בהן שימוש כתגובה לגורמי הלחץ‪ ,‬הם‬ ‫ייחודיים לאוכלוסייה הזו או שאינם כאלה‪.‬‬ ‫הדרכה ותהליך ניהול משא ומתן על החלמה‬ ‫ח' ירושלמי‪ ,‬חיפה‬

‫מאמר זה מציע לשאול את המושג "משא ומתן" מפסיכואנליזה‬ ‫התייחסותית אל תחום הטיפול באנשים הסובלים ממחלות‬ ‫נפש חמורות‪ ,‬וכן לעשות בו שימוש גם בהדרכה שניתנת עבור‬ ‫טיפול זה‪ .‬שימוש כזה במשא ומתן עשוי לתרום לשדה השיקום‬ ‫הפסיכיאטרי‪ ,‬במיוחד לאור ההתפתחויות האחרונות בכיוון‬ ‫"פרקטיקה מכוונת החלמה" בשדה זה שמציבות בפני אנשי‬ ‫המקצוע הזדמנויות חדשות ומרתקות בצד אתגרים רבים‪.‬‬

‫כתב עת ישראלי‬ ‫לפסיכיאטריה‬ ‫האם לאנשים עם מחלות נפש קשות הצורכים‬ ‫שירותי סל שיקום פסיכיאטרי בישראל תוצאים‬ ‫טובים יותר מאלו שאינם צורכים שירותים אלו?‬ ‫ד' רועה‪ ,‬נ' ורבלוף‪ ,‬מ' גלקופף‪ ,‬חיפה‬

‫רקע‪ :‬מאז יישומו של חוק שיקום נכי נפש בקהילה לפני‬ ‫כעשור‪ ,‬הולך וגובר מספר האנשים הצורכים שירותי שיקום‬ ‫פסיכיאטריים הכלולים ב"סל שיקום"‪ .‬למרות זאת‪ ,‬בולט‬ ‫היעדרם של מחקרים הבוחנים את השפעתם של שירותים אלו‪.‬‬ ‫מטרתו של מחקר זה היא לבחון האם אנשים עם מחלות נפש‬ ‫קשות הצורכים שירותי שיקום פסיכיאטריים בישראל מדווחים‬ ‫על תוצאים טובים יותר מאשר אנשים עם מחלות נפש קשות‬ ‫הזכאים לשירותים אלו‪ ,‬ואשר פנו לקבלתם‪ ,‬אך טרם צרכו את‬ ‫השירותים‪.‬‬ ‫שיטה‪ :‬רואיינו ‪ 1,191‬אנשים עם מחלות נפש קשות ‪595 -‬‬ ‫הצורכים שירותים שיקום פסיכיאטריים ו־‪ 596‬שאינם צרכנים‪.‬‬ ‫בעזרת ניתוחי שונות נבחנו הבדלים בין שתי הקבוצות באיכות‬ ‫חיים‪ ,‬שביעות רצון כללית וסימפטומים פסיכיאטריים‪ ,‬תוך‬ ‫תקנון לגיל ומצב משפחתי‪.‬‬ ‫תוצאות‪ :‬נמצא כי אנשים עם מחלות נפש קשות הצורכים‬ ‫שירותי שיקום פסיכיאטריים מדווחים על תוצאים טובים יותר‬ ‫מאלו שאינם צרכנים‪ :‬איכות חייהם ושביעות רצונם הכללית‬ ‫גבוהים יותר והם סובלים מפחות סימפטומים פסיכיאטריים‪.‬‬ ‫ההבדל הבולט ביותר בין הקבוצות הוא בתחום התעסוקה‬ ‫וההכנסה‪ ,‬כאשר אנשים שאינם צרכני שירותי שיקום קיבלו‬ ‫ציון נמוך ב־‪ effect sizes 0.9‬מאלו שצורכים שירותים אלו‪.‬‬ ‫מסקנה‪ :‬ממצאי המחקר הנוכחי‪ ,‬המתבססים על מדגם גדול‪,‬‬ ‫מעידים על יעילותם של שירותים השיקום הפסיכיאטריים‬ ‫הכלולים ב"סל שיקום"‪ .‬מחקרים עתידיים הכוללים דירוג‬ ‫אובייקטיבי יותר של התפקוד על ידי אנשי המקצוע המטפלים‬ ‫יספקו מבט מעמיק יותר על הקשר שבין צריכת שירותי שיקום‬ ‫פסיכיאטריים ותוצאים‪.‬‬ ‫סיכויים וסיכונים בדרך לרפורמה‬ ‫בבריאות הנפש בישראל‬ ‫א' אבירם‪ ,‬פרדס חנה ‪ -‬כרכור‬

‫מחקר זה בחן את הניסיונות לרפורמה בתחום בריאות הנפש‬ ‫בישראל‪ .‬מטרת הרפורמה הייתה להסיט את מרכז הכובד של‬ ‫שירותי בריאות הנפש ממערכת אשפוזית למערכת קהילתית‪.‬‬ ‫המחקר התמקד בשינויים שחלו במדיניות ובשירותים‬

‫‪israel journal of‬‬

‫‪psychiatry‬‬ ‫כרך ‪ ,47‬מס' ‪2010 ,3‬‬

‫בבריאות הנפש בעשור האחרון‪ ,‬וניתח את המגמות והסוגיות‬ ‫שעלו בנושאים הנוגעים בעיקר לתחיקה‪ ,‬ללקוחות המערכת‪,‬‬ ‫לתקציביה ולכוח האדם המפעיל אותה‪ .‬הממצאים מצביעים על‬ ‫ירידה ניכרת במספרן של המיטות הפסיכיאטריות‪ ,‬קיצור משך‬ ‫האשפוז הממוצע בבתי החולים לחולי נפש‪ ,‬הפחתה במספר‬ ‫העובדים בשירותים הממשלתיים לבריאות הנפש‪ ,‬וכן גידול‬ ‫משמעותי בשירותי השיקום הקהילתי‪ .‬עם זאת‪ ,‬במשך התקופה‬ ‫הנדונה לא נסגר אף בית חולים ממשלתי לחולי נפש ותקציב‬ ‫האשפוז גדל‪ ,‬בעוד התקציב המיועד למרפאות בריאות הנפש‬ ‫בקהילה קטן‪ .‬הניסיונות להעביר לקופות החולים את האחריות‬ ‫לשירותי בריאות הנפש עדיין לא צלחו והרפורמה המלאה‬ ‫לא הושלמה‪ .‬מצב זה מסכן אף את השינויים שחלו במערכת‬ ‫בריאות הנפש עד כה‪ .‬הדיון מנתח את הסיכויים והסיכונים‬ ‫בדרך להשלמת הרפורמה בבריאות הנפש‪ .‬דומה כי הסטיגמה‬ ‫וההדרה החברתית של אנשים הסובלים ממחלות נפש‪ ,‬וכן‬ ‫מידת תשומת הלב המעטה המוקדשת בסדר היום הציבורי‬ ‫לבעיות בריאות הנפש בהשוואה לנושאים אחרים שהחברה‬ ‫הישראלית נאלצת להתמודד עמם‪ ,‬השפיעו על חוסר ההצלחה‬ ‫ביישום הרפורמה בבריאות הנפש‪.‬‬ ‫תרומתם של צרכני בריאות הנפש האוסטרלים‬ ‫להערכה ולשיפור של שירותים מכווני החלמה‬ ‫ס"ל מרשל‪ ,‬ל"ג אודס‪ ,‬ת"פ קרו‪ ,‬וולנגנג‪ ,‬אוסטרליה‬

‫רקע‪ :‬מרכיב עיקרי אחד של שירותי בריאות נפש מכווני‬ ‫החלמה‪ ,‬אשר לרוב מתעלמים ממנו‪ ,‬כולל שיתוף פעולה אמיתי‬ ‫בין חוקרים וצרכני שירותים (מתמודדים) לצורך הערכת‬ ‫שירותים הניתנים כיום תחת מסגרת ההחלמה ושיפורם‪.‬‬ ‫שיטה‪ 18 :‬צרכנים של שירותי בריאות הנפש אשר עובדים‬ ‫עם צוות אשר קיבל הכשרה במסגרת מודל שיתוף פעולה‬ ‫להחלמה (‪ )Collaboration Recovery Model - CRM‬השתתפו‬ ‫במפגשים של קבוצות מיקוד‪ .‬כל מפגש ארך כשעתיים וחצי‪,‬‬ ‫במטרה לקבל בסוף כל מפגש משוב שישפר בעתיד את ה–‪CRM‬‬ ‫והשימוש בו במסגרת שירותי בריאות הנפש‪.‬‬ ‫ממצאים‪ :‬הצרכנים זיהו דרכים עיקריות לשיפור מודל ‪,CRM‬‬ ‫הן ברמה הספציפית והן ברמה הכללית‪ ,‬על מנת ליישם אותו‬ ‫טוב יותר כחלק מהחזון של שירותים מכווני החלמה‪ .‬הממצאים‬ ‫מצביעים על כך שהצרכנים רוצים להיות מעורבים ומועצמים‬ ‫יותר בשימוש של מודל ‪.CRM‬‬ ‫מגבלות‪ :‬ייתכן שתהליכי הדגימה המשופרים הובילו לזיהוי‬ ‫צרכנים לא מרוצים נוספים‪.‬‬ ‫‪241‬‬ ‫‪240‬‬