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American Journal of Psychiatric Rehabilitation

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Sharing the Message of Hope, Wellness, and Recovery with Consumers

Psychiatric Hospitals

Margaret (Peggy) Swarbrickab; George H. Brice JR.c

a Collaborative Support Programs of New Jersey, Inc., b Department of Psychiatric Rehabilitation,

University of Medicine and Dentistry of New Jersey, School of Health Related Professions, Scotch

Plains, New Jersey, USA c Collaborative Support Programs of New Jersey, Inc., Freehold, New Jersey,

USA

To cite this Article Swarbrick (Peggy) , Margaret and Brice JR., George H.(2006) 'Sharing the Message of Hope, Wellness,

and Recovery with Consumers Psychiatric Hospitals', American Journal of Psychiatric Rehabilitation, 9: 2, 101 — 109

To link to this Article: DOI: 10.1080/15487760600876196

URL: http://dx.doi.org/10.1080/15487760600876196

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Sharing the Message of Hope,

Wellness, and Recovery with

Consumers Psychiatric Hospitals

Margaret (Peggy) Swarbrick

Collaborative Support Programs of New Jersey, Inc., and

Department of Psychiatric Rehabilitation, University of

Medicine and Dentistry of New Jersey, School of Health

Related Professions, Scotch Plains, New Jersey, USA

George H. Brice Jr.

Collaborative Support Programs of New Jersey, Inc.,

Freehold, New Jersey, USA

The concept of wellness has been emerging in the recovery field as an exciting new paradigm for understanding health and encompasses the following dimensions: physical, social, emotional, intellectual, occupational, and spiri-tual (Swarbrick, 1997). Efforts are underway in New Jersey to incorporate this concept into the programming of consumer-run mental health services (e.g., self-help centers) and there has been some interest on the part of more tra-ditional rehabilitation settings to incorporate this philosophy into their treat-ment practices as well. A statewide, consumer-run project was developed whereby consumers of mental health services go back into state psychiatric facilities in New Jersey as consultants, teaching wellness and recovery princi-ples and strategies to current patients and staff. This article will describe how a small cadre of consumers (ex-patients) gained access to training opportu-nities and enough support to present a curriculum in basic principles and stra-tegies of wellness and recovery at state hospitals. The challenges in bringing recovery-oriented thinking into settings that historically have been resistant to change will be shared as well as the success of the Recovery Network Project.

Address correspondence to Peggy Swarbrick, 11 Spring St, Freehold, NJ 07728, USA. E-mail: [email protected]

101 ISSN: 1548-7768 print=1548-7776 online

DOI: 10.1080/15487760600876196

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Keywords:Peer educators; Recovery; Wellness

Historically, state psychiatric hospitals have been the least likely places for progressive ideas and ‘‘consumer-friendly’’ policies and practices to manifest in the mental health system. There is a gradual trend to shut down these facilities and replace them with community-based services in which the more empowering and person-centered principles of psychosocial rehabilitation can take hold. Nonetheless, because state psychiatric hospitals will continue to be operational for at least the short-term a group of consumers (ex-patients) have decided to collaborate with staff in the state hospitals to help humanize and update the programs in these set-tings by introducing the concept of recovery and, in particular, the principles and strategies of wellness. In addition to seeking cul-tural change at the institutional level we aim to educate current staff and those hospitalized (i.e., current patients).

RECOVERY NETWORK PROJECT RATIONALE

In New Jersey the mental health consumer movement has taken steps to orient the mental health system to the concept of recovery and wellness. However, we have a long way to go to fully trans-forming the system at all levels. Collaborative Support Programs of New Jersey, Inc. (CSP), a consumer organization, developed the Recovery Network Project to provide training and support for consumers so that they can take the message of wellness and recov-ery to the state hospitals. The initial ideas for this project were derived from the experiences of consumers leaving the state hospi-tal system. They often lacked self-help skills, had no knowledge of consumer-oriented resources, and were not empowered to become active participants in planning their own lives. This lack of know-ledge prevented them from finding the support they needed to move positively toward their life goals.

Consumers and those who support them need to begin at the state hospital level to make their recovery possible. Consumers and hospital staff need to be aware of the concept of recovery and the consumer-operated resources, such as self-help groups, self-help centers, as well as natural supports that contribute to com-munity living and wellness and can help to circumvent further institutionalization.

102 M. Swarbrick and G. H. Brice

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Advances in psychopharmacology, consumer education about mental illness, and social and community support services have considerably changed the landscape of recovery for mental health consumers. Yet, many parts of the mental health system, including the state hospital, continue to be based on the confines of medical models and vestiges of the asylum. These restricted settings do not empower individuals to recover and have purpose in their lives. The medical model focuses on symptom reduction: rapid stabili-zation and interventions based on deficiencies and incapacity. In this deficit-based approach, individuals are seen in terms of their ill-ness. Often overlooked are people’s interests, skills, abilities, and potential to achieve personal goals (Swarbrick, 2006). This narrowed focus often exacerbates the illness rather than promotes recovery.

In our experiences in New Jersey the state hospital system seems to steer consumers toward traditional, medical model services. Despite the availability of recovery-oriented community supports including 27 consumer-operated self-help centers and a vast array of self-help groups for mental health issues, a significant number of providers are unaware of these types of consumer resources. Most hospital staff and administrators are also not aware of the consumer-oriented services that can be a vital resource for patient recovery. Heretofore, there has been no mechanism in place for referrals to link mental health consumers in state hospital settings to consumer-oriented, peer-delivered, recovery-based services in the community. State hospital treatment-planning teams meet only with traditional service providers to arrange discharge. The mechanisms for communication between New Jersey state- and community-based traditional mental health services tend to focus on linking consumers to medical model services such as Intensive Case Management Service (ICMS), Program of Assertive Com-munity Treatment (PACT), and outpatient medication monitoring. The transition from being an inpatient to living in a community set-ting typically does not include links to consumer-operated resources such as self-help centers, self-help groups, or advocacy opportunities that utilize natural supports and meet consumers’ long-term social and emotional needs.

It was clear from feedback gathered from consumers who were leaving the state hospitals that they were not exposed to any recov-ery resources while in the state hospital setting. They reported that there was limited awareness of the possibility of recovery, much less the availability of recovery resources and natural supports that

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would help them succeed in the community. In addition, consu-mers once discharged from state facilities have multiple needs and face a number of obstacles to living in their communities. Many in these settings are living in poverty.

Based on these issues and experiences consumer leaders in New Jersey made efforts to establish a formal mechanism through which to link other consumers to community-based, consumer-operated resources and natural supports. Consumer leaders wanted to pro-vide other consumers with access to resources that offer essential community supports at little or no cost to consumers, which can be viewed as an effective alternative to more costly traditional men-tal health service programs.

RECOVERY NETWORK PROJECT DESCRIPTION AND CONTENT CSP staff proposed the idea of the Recovery Network Project, which was designed and is delivered by consumers for consumers cur-rently in the state psychiatric hospitals. The primary purposes of this project are to provide a clear message of hope and expose con-sumers currently in a state facility to the array of self-help, wellness, and recovery resources that are available. Through weekly group meetings run by mental health consumers who are already in recovery experiences and resources are shared so that persons with a mental illness currently living in the state hospitals can access peer and consumer-self-help services both in their current environ-ment and then when they return to the community.

The presenters (peer educators) are persons in recovery, who share their own recovery journey and the skills, knowledge, and supports that have helped them. Another goal of the Recovery Net-work Project is that they will become agents of change within the state hospital system, helping consumers to become more influen-tial in their discharge planning process and to provide access to consumer-oriented resources. The peer educators are proof that recovery is possible and they share how they have struggled to accept that they have a mental health diagnosis and learned ways to cope and move toward living a fuller life beyond their diagnoses. Peer educators share things that have worked for them and might help consumers who are currently in the state hospitals to look into themselves to find personal strengths and talents that will help them learn to manage their illness and move toward a path of recovery

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and wellness. The peer educators also provide renewed hope and optimism that people diagnosed with a psychiatric disability (men-tal illness) can grow beyond the limits of their diagnosis, live a full life, and accomplish personal goals and dreams. Through sharing their experiences we hope others will enter a recovery journey and seek a wellness lifestyle that is personally satisfying.

The Recovery Network Project addresses some of the important system transformation goals of the President’s New Freedom Com-mission on Mental Health (2003). Some relevant Recovery Network Project goals includes: (1) involve mental health consumers in orienting the mental health system fully toward recovery through outreach to state inpatient mental health settings; (2) present the message of recovery and hope; (3) afford opportunities for other consumers and staff in state hospitals to meet and learn from peers; and (4) provide consumers with access to natural supports and linkages to consumer-operated resources in the community.

The Recovery Network Project offers recovery-oriented resources and skills for consumers leaving the state hospital. The project aims to assume a role in revamping the state hospital discharge planning process by providing access to fellow consumers as well as linkages to recovery-oriented resources. The goal is to help consumers move into their communities with strong connections to the entire array of natural community supports and self-help resources. Consumers currently at state hospitals nearing discharge can access knowledge and resources that may improve their quality of life. The project also provides staff training and exposure to consumers in recovery to demonstrate that recovery is possible and promotes linking con-sumers with consumer-operated services in the community prior to leaving the hospital.

The weekly group content has been organized into a six and twelve session cycle. Table 1 outlines some of the main session topics and content.

CHALLENGES

Implementing the Recovery Network Project has been a challenge. Navigating the policies, procedures, and the unique culture of each state psychiatric facility, as well as issues of recruitment, led to major modifications with regard to the initial implementation plans. For example, the consumers working as Recovery Network

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Project staff had to be subjected to the usual hospital employment screening process, including an initial finger-printing process which prevented the Project from starting in a timely manner. The Recovery Network Coordinator and CSP administrative staff worked collaboratively with the Division of Mental Health Service and hospital administration staff to formalize efficient administrat-ive procedures.

TABLE1. Recovery network topics and session content

Topic: Starting a Recovery and Wellness Journey!

. Recovery and wellness are possible.

. The recovery and wellness group series will be offered in a supportive learning environment and we hope you will benefit!

. Our Recovery journey is an on-going process and we can learn from our own and the experiences of others in order to achieve our goal of returning to living, learning and working in the community.

. Exploring our past and=or current experiences of hope can inspire hope in our pursuit of wellness.

Topic: Achieving Hope and Maintaining Wellness

. We all have experienced hope and we can regain and=or maintain a sense of hope through the support of others.

. Hope is an achievable inner feeling we can nurture through self-care and personal wellness maintenance.

. We are not their psychiatric diagnoses.

. Learn how the ‘‘attitude of hope’’ impacts on life expectancy and our recovery journey.

. Finding support is key and when you feel hopeless it is okay to ask for help and allow someone else to hold the hope for you.

Topic: Defining Personal Wellness

. We are more than our mental health diagnosis.

. We are a whole person who has strengths in the following dimensions: physical, environmental, intellectual, spiritual, social, occupational, and mental=emotional.

. Wellness is a ‘‘choice’’ and a healthy lifestyle is achievable.

. There are tools that can help us create a commitment to a healthy lifestyle. Topic: Positive Self-Talk: Removing the Negative Self-Talk Barriers

. Negative self-talk is something we may do unconsciously that can interfere with our wellness and recovery goals.

. Learning to reframe our negative self-talk can enhance our feelings of wellness and help us reach our recovery goals.

. Learn to pay attention to our mental habits is a skill that can improve our sense of well-being.

Topic: Motivation

. Motivation is a source of strength that can help us act on our thoughts ideas and intuition.

. It is important to reflect on our sources of motivation and find ways to fuel our drive and commitment to our personal wellness lifestyle and recovery journey.

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Recruiting and training consumer peer educators was a chal-lenge. In order to serve all state hospitals on a weekly basis the project staff had to recruit and train a larger than expected pool of presenters who had convenient access to the facility. The state psychiatric facilities are not easily accessible using public trans-portation and many of the peer educator recruited either do not drive or do not have their own vehicle.

As the project evolved the need for on-going training and sup-port for the peer educator became necessary for on-going skill building and to assist peer educators in dealing with their own per-sonal life stressors. All peer educators are eligible to receive a sti-pend but some are not able to earn the extra income due to its potentially negative impact on their current supplemental income sources (SSDI and SSI).

Initially, some hospital staff were skeptical about the idea of hav-ing someone who was previously hospitalized at the facility return in this new role. The project staff provided education for the hospi-tal staff about the value and importance of having peer role models share their personal success stories. This project has helped hospital staff and hospitalized consumers become more aware of the mental health consumers who were formerly hospitalized at a state psychi-atric facility and have had personal successes in their roads to recovery.

There was some initial fear on the part of some hospital staff that a peer educator may experience a relapse that could lead to rehos-pitalization. This was not viewed as a barrier for the overall project. One peer educator who participated in the initial training did eventually decide to drop out due to strong emotional reactions to returning to the hospital in which treatment had once been received.

The presence of peer educators in the facilities challenged hospi-tal staff to re-examine their view of recovery and menhospi-tal illness. This challenged administrative, clinical, and rehabilitation staff to examine a new definition of recovery as a life-long and daily process of managing symptoms and stressors and developing a lifestyle that includes: adequate rest and sleep, recreation, intellec-tual stimulation, and nutrition; attention to spiriintellec-tual needs; and positive personal relationships.

The project emphasizes that recovery is possible through a com-bination of taking personal responsibility for self-care, accessing professional services as needed, and establishing a support network.

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ACCOMPLISHMENTS

Once the project was implemented at the five psychiatric facilities, a collaboration emerged, especially for working with rehabilitation departments. Hospital staff have requested regular meetings to brainstorm ways that this program and other existing hospital pro-grams can reduce recidivism rates. Staff requested additional train-ing and meettrain-ing time to help them further integrate the wellness-and recovery-oriented principles into their existing programs wellness-and services. The project established a collaborative partnership between the peer educator and hospital staff and the goal is for this collaborative relationship to continue between the hospital staff and the consumers who should be discharged to community living.

The rehabilitation departments within the state hospitals have expanded the Recovery Network Project into existing program-ming. In addition, they are looking at the possibility of establish-ing an in-house self-help group to maintain morale and offer additional peer support. The projects staff have also discussed cre-ating a mechanism whereby consumer-operated self-help center members outreach as community ‘‘mentors’’ to individuals being discharged and assist them in navigating the scarce community resources.

The Recovery Network Project thus far has seemed to have a direct, positive impact on peer educators. Participation has inspired peer educators to increase their knowledge through formal training as well as encouraged on-going training. For example, some peer educators have registered for college courses and one has left the project to work full-time as a peer advocate for the Program of Assertive Community Treatment (PACT).

Some unintended outcomes of the project include expansion of this program into partial care (day) programs in the community. Many mental health consumers become warehoused in partial care setting similar to the warehousing that occurs in state hospital. The Recovery Network Project material was adapted and now brings a fresh perspective into these partial care programs that typically warehouse people and promote stagnation. Partial care programs are very expensive settings that mostly provide socialization, recreational activities, psycho-educational groups, and clinical support. Too often partial care programs are dwellings that create lifeless, sleepy, and irritable individuals yearning for active partici-pation in the community. To highlight some feedback the following

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is a letter from partial care participants who attended a recovery and wellness group.

Our group would like to thank you for coming to our program to deliver your message of hope. Your words and personal stories were inspirational. You helped us believe that with hard work we can have a brighter future. And last, that we should never give up on our dreams. We hope you can return.

SUMMARY

The Recovery Network is a new project that was developed based on the needs of consumers and gaps in existing service delivery sys-tem. The project provides a recovery and wellness training group program at each state psychiatric facility, and is delivered by ex-patients who offer hope, purpose, and meaning for both consumers and staff in the hospital. Staff and hospitalized consumers have the opportunity to see that ex-patients can and do resume valued social roles such as neighbor, friend, worker, student, parent, sibling, fam-ily member, and community citizen. The project provides a mech-anism that empowers former patients to share their own life experiences and serve as role models. Although the project has encountered challenges, we believe there have been many more accomplishments and positive outcomes. Efforts are underway to work with a local university to begin a formal evaluation of this project in order to enhance the project and improve the ways in which peer-educators can continue to serve as positive role models for the mental health consumers who are currently hospitalized. REFERENCES

President’s New Freedom Commission on Mental Health. (2003). Final report. Retrieved October 20, 2005 from http:==www.mentalhealthcommission.gov=

reports=FinalReport=Full.

Swarbrick, M. (2006). A wellness approach.Psychiatric Rehabilitation Journal,29(4), 311–314.

Swarbrick, M. (1997). A wellness model for clients.Mental Health Special Interest Section Quarterly,20, 1–4.