The International Journal of Psychosocial Rehabilitation

A Vision and Mission for Peer Support- Stakeholder Perspectives

Doris Leung, RN,MN
dorisleung@sympatico.ca.

Lara De Sousa, BSc. O.T.
ldesousa@cmha-toronto.net

Citation:
Leung, D. & DeSousa, L.  (2002)   A vision and mission for peer support - stakeholder
perspectives.  International Journal of Psychosocial Rehabilitation. 7,  5-14.

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Author Information:
Doris Leung is a Consultant with a Clinical Specialty in Mental Health Nursing.  She worked for the Canadian Mental Health Association (CMHA) Metropolitan Branch during the months of June 2001-Dec. 2001 to complete this report.  She continues to work as a Consultant from her home office in Toronto, Ontario.
Lara de Sousa is a Program Manager for a Community Support Team at the Canadian Mental Health Association (CMHA) Metropolitan Branch, 970 Lawrence Avenue West, Suite 205, Toronto, Ontario, M6A 3B6 Canada 416-789-7957 ext. 291.
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Abstract
Peer support has been described as a key component to the recovery process of mental illness (Mead & Copeland, 2000); a message that mental health consumer groups have been highlighting since the 1970s (Petr, Holtquist & Martin, 2000). Peer support has been defined as a form of social network therapy in which stigmatized persons interact with each other, feel self-acceptance, and strive to be valued members of a community (Schubert & Borkman, 1991). This paper describes the process that the Canadian Mental Health Association (CMHA)- Metropolitan Branch initiated to decrease social isolation through peer support for consumers within the agency. The process began with a systematic literature review of different models of peer support. It also incorporated interviews with key stakeholders that described a vision, mission, gaps, and future direction for peer support.
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Introduction
In 1997, the Canadian Mental Health Association conducted consumer satisfaction surveys that attempted to capture consumers’ perspectives on issues that were important in their recovery process and how CMHA was addressing them. One of the primary themes that arose from these surveys was that consumers felt that what was critical to their health was "a job, a home, and a friend". Consumers pointed out that CMHA was providing sufficient resources to acquire the first two, but that opportunities for social interaction through peer support were lacking.
The purpose of this article is to describe the first steps to augment peer support at CMHA. To achieve this, the writers completed a literature review and interviewed consumers who have provided peer support formally or informally as well as professionals who manage and facilitate mutual support services. The results revealed a framework that can facilitate a better understanding of peer support and lead to enhanced opportunities for consumers.

Background Literature
The writers began with a literature search that resulted in 48 articles to answer the questions: What is social network therapy?; How is social network therapy helpful, if it is?; How can existing resources (i.e. staff) be used to assist clients to connect with each other socially to provide peer support?; And how is the effectiveness of social support therapy evaluated?

A systematic review of the articles reveals that peer support is a form of social network therapy where advice and support on "community survival" and advocacy occurs (Carling, 1995). There are three (3) different approaches in which peer support is used for those with severe mental illness: a) mutual support groups- voluntary, informal (often drop-in) groups led by peers for a specific condition or life transition; b) consumer-run services- peers as paid employees of a program that cultivate a consistent and regular interaction with peers; c) employment of consumers as mental health providers within clinical and rehabilitative settings (Davidson, et al, 1999).

Though past research findings are limited due to the lack of rigor in their methodologies, significant gains have been described by participants of groups offering peer support in areas of: self-esteem, better decision-making skills, improved social functioning, decreased psychiatric symptoms (i.e. decreased rates or lengths of hospitalization), lower rates of isolation, larger social networks, increased support seeking, and greater pursuit of educational goals and employment (Davison et al, 1999; Humphreys & Rappaport, 1994; Froland, et al, 2000).

Despite the potential gains of peer support, only a minority of consumers with severe mental illness, that is, up to one third of individuals, participate in activities offering mutual support. In fact, participation appears to be related to "person-environment fit rather than universal appeal" (Davidson, et al, 1999, pg. 168). A significant contributor to this phenomenon includes the attitudes of mental health professionals toward mutual support services. Many are reluctant to refer their clients and even perceive them as potentially detrimental to their overall functioning (Goldman & Lefley, 1991). Clearly, partnerships struck between professional and peer support services are necessary for the peer support role to have a substantial effect on the majority of mental health consumers (Davidson, et al, 1999). Furthermore, due to low utilization and high attrition, it is clear that "mutual support groups alone, and in their current form, do not constitute a sufficient strategy to ensure opportunities for peer support and access to effective role models for person with serious mental illness" (Davidson, et al, 1999, pg. 186).

Stakeholder Interviews
Having completed the literature review, the next step was to interview stakeholders currently delivering or having had experience with peer support services to give further direction to CMHA. A sample of 15 internal and external stakeholders (consumers, consumer groups, and agencies) was interviewed from CMHA- Metropolitan Branch and within Southwestern Ontario. The interviews were conducted in person or by phone and took anywhere between 30 minutes to one hour to complete.

Consumers were asked:

1)What does peer support mean to you?

2) What are the benefits and challenges of peer support?

3) Given your experience, what models or ways would you like peer support to be occurring at CMHA?

 Agencies were asked: 1) Can you describe your model of peer support?

2) How do you evaluate your service?

3) What are the benefits and challenges you face in your service?

4) Given your experience, what would you recommend to CMHA to enhance opportunities for peer support?

5) How would you like to see the future of peer support progressing? The responses of the semi-structured interviews were recorded with pen and paper or tape recorded if given permission. All the results were read and discussed by both interviewers to identify themes.
 

Results of Stakeholder Interviews
The responses clearly demonstrated that there is not one common vision and mission for peer support services. In addition, results identified a need to empower peer support as a valuable resource alongside more familiar and conventional public mental health services. Responses also reinforced barriers to participation in peer support activities including transportation, lack of childcare, limited time and income.

A Vision for Peer Support Services
Paul Reeve, The Executive Director of Mutual Aid Psychiatric Survivors in Guelph, Ontario, described a vision of peer support that depicts people along a dynamic continuum of wellness and involvement in their community. He stated: "Every person with or without a mental health/ emotional problem is capable and worthy of being a contributing citizen in his/her community. A citizen is someone who can participate in activities that they choose." To understand this vision, one must then evaluate the degree that a peer support service is assisting to "integrate, not segregate, a person within the community. If there is movement towards wellness and community integration, this is the ultimate measure of success." Towards this end, peer support services should not become an "extension of the formal mental health system, but provide ‘non-prescriptive’ care for anyone to assist in resolving their problems." In the words of Karen Nusbaum of the Mood Disorders Association of Ontario, "peer support does not recommend treatment options or give ‘medical advice,’ nor does it replace therapy. It complements existing supports and services and can serve as a tool to advocate on behalf of people to enable them to have enhanced quality of life in their community."

The Mission and Values of Peer Support
The mission and values of peer support were articulated throughout the dialogues with stakeholders and sometimes formally within pamphlets/ flyers of various agencies. Common themes emerged:

  • To foster self-help
  • To foster independence amongst peers who enable each other by sharing similar issues and experiences
  • To encourage or role model ways to reach personal goals ( i.e. "you can compare your experiences with others and see others doing well")
  • To create a physical space that members feel ownership
  • To provide a non-threatening, non-judgmental, confidential, safe, and friendly environment where people can come to socialize and overcome the isolation of mental illness ( i.e. "makes you feel like you are not alone," "a place where you can be yourself," "know that somebody cares")
  • To be responsible and accountable to other members
  • To create a place where members have choice of activities
  • To make connections to other people who may become friends, i.e., "can make friends and go outside of group with them"
  • To improve consumers’ ability to deal with mental illness ( i.e. "helps people become more active and leads to better mental health," "reduces depression," "helps concentration at work knowing you have a place to talk to others after work")
  • To encourage leadership roles/ skills amongst members, i.e., "members helps other members learn different skills, like cooking or social skills to get along with others," "to learn to resolve conflicts"
  • To strengthen and support people and their families in their role as caregivers
  • To provide education and information about resources for people with mental health problems, families, professionals, and the public
  • To eliminate discrimination and stigma regarding mental/ emotional illness
  • To advocate on behalf of people with mental/ emotional problems and their families
  • The mission and values of peer support were clearly understood by most of the stakeholders. However, how their mission was enacted varied a great deal. In fact, there was some disagreement as to the effectiveness of certain models, such as the "clubhouse or drop-in models." The writers assert that a wide breadth of services is required to "fit" the complex needs of individuals with mental illness. The role of peer support would be to facilitate the integration of consumers as active and valuable members of their community. Within this process, consumers can potentially move in the direction that meets their needs and where different types of peer support would be ideally accessible and available.
     

    Figure 1

    -professionally-run groups 
    (clubhouses & drop-ins)
    groups












     

    -consumer-run services
    -mutual support 
    into community

    -employment of consumers
    as mental health providers









     

    -peers
    integrated



     
     
     
     
     
     
     
     
     
     
     

     
    Gaps Identified by Stakeholders
    Three (3) gaps were identified by stakeholders that need to be addressed for future of peer support services: (a) leadership (b) funding, and (c) the ability to address a diversity of needs that include ethno cultural and social factors. Leadership amongst consumers is repeatedly identified as a priority and includes the need for: mentorship for consumers, group facilitation training, peer outreach, greater control over coordination and planning of activities, advocacy, education outreach for consumers, their families, professionals, and the public, and assistance in helping others start peer support services.

    Funding is needed to facilitate outreach, training, education, and resources. It is also needed to breakdown some of the barriers to participation that have been described above (i.e. accessibility, limited income, childcare).

    The challenge of meeting ethnic and cultural diversity is of paramount importance when Toronto and Greater Toronto is recognized as one of the most diverse cities in all of North America.

    Future Direction for Peer Support Services
    In accordance with the results of the literature review, the majority of stakeholders concur that there is a need to strike partnerships between professional and peer support services. All stakeholders emphasized to avoid duplication of services, that is, "know your community and develop joint ventures". The involvement of consumers in the planning of services was also highlighted. As Marnie Shepard of the Ontario Peer Initiative stated: "true peer support means there is not an ‘expert’ and a ‘client that define what people are doing." Partnership models suggested between CMHA and other agencies were ones whereby opportunities for peer support could be enhanced by: facilitating training and participation of consumers within leadership roles, seeking and coordinating referrals between different agencies on a regular basis, providing reciprocal consultation, networking, assisting with evaluation of services, outreach, and the development of a central referral service with a web-site for resource information.

    All stakeholders supported giving consumers the opportunity and training to serve on committees or within specific jobs as peer workers. Some felt that consumers needed to be remunerated for their training and work to avoid, as one person put it, "the exploitation" of knowledge and experience of consumers.

    If there was a partnership between peer support services and CMHA, one organization strongly felt, and literature supports (Wintersteen & Young, 1998), that the facilitative role of CMHA would be temporary. This would promote opportunity and self-actualization for consumers who could divest from the formal sponsoring organization (at a mutually agreed upon time) and ultimately become autonomous.

    Perspectives from CMHA Consumers
    The internal stakeholders of CMHA (staff and consumers) were the main sources asked to brainstorm ways to enhance peer support. The needs were twofold: to focus on enhancing individual skills to cope with illness and everyday life and to have existing peer support services become more accessible and practical.
     

    Specific suggestions included: train consumers to give telephone support to others peers

    train consumers to lead support groups three to five times a week

    train consumers to give first aid and CPR, craft skills, etc. "anything that would help other consumers to deal with daily life"

    have a health and wellness group that has open topics about disabilities, exercise, nutrition, etc.

    have a business group and space with access to a computer, the internet, a fax machine, a telephone, and assistance to learn how to write resumes or budget their finances

    have a supplementary food bank and clothing depot for consumers of CMHA
     

    To improve existing peer support activities, consumers requested: have professional support and consultation to assist with setting up and running groups

    have recreational activities coordinated and planned by a board of members to give a variety of choice coming from the membership

    encourage responsibility and accountability to other members during group activities, e.g. to use a nominal fee for attendance or to encourage a policy of (apart from illness) "three strikes and you’re out"

    encourage social activities outside the walls and boundaries of designated spaces with communication boards or an exchange of telephone numbers to allow informal social activities to occur

    have a comfortable place where one could drop-in during the day and that is wheelchair accessible

    have a mentorship or "buddy" program where trained volunteers give support and encourage social and practical daily living skills to mental health consumers

    expand existing peer support services to have more space and capacity for recreational activities
     

    Perspectives from Peer Support Agencies
    Stakeholders voiced similar challenges in facilitating social connections amongst peers. Leadership needs to be flexible amongst consumers. For example, they may have to be relieved of duties if they fall ill, and a roster of trained consumers needs to be readily available on-call. It may be of interest that Cambridge Self-Help (CASH) is a model of mutual support services that has successfully overcome this challenge by hiring four (4) part-time staff to provide consistent and reliable leadership around social and recreational activities.

    A common challenge is how to get members excited and motivated to attend when often apathy and an internalized stigma are present. However, once consumers participate, there is then the challenge of retention as well as "letting go" towards integration into the community. It was interesting to note that several stakeholders identified a sub-culture of people who work within mental health programs or experience mental illness, that foster the assumption that people with mental illness "can only hang out with other people with mental illness." One consumer, in particular articulated his struggle to "free himself" from this sub-culture and be "around non-judgmental, ‘normal’ people." As Paul Reeve stated, "the challenge is the degree in which we foster consumers’ capability within an enabling role, as opposed to a disabling one".

    Finally, the evaluation of peer support initiatives was daunting for all stakeholders without support resources to facilitate this. All agreed that a combination of qualitative and quantitative methods are necessary to establish effectiveness and efficiency of resources.

    Discussion
    The writers assert the need for a framework for peer support that has a clear vision that is flexible to the needs of the diverse community in which it serves. The challenge for many public mental health agencies will be to negotiate common ground for a vision and mission of peer support that complements their existing beliefs and pedagogy. As traditional mental health staff training does not include the importance of peer support, it may be necessary to include a variety of strategies to allow staff of C CMHA to learn and engage with self-help groups and their philosophy of care. According to literature, experiential learning opportunities need t be expanded to include more direct involvement or linkage with self-help groups and greater preparation for the roles of partner and consultant (Stewart, 1990). It is imperative that administrative leaders and clinical opinion leaders support a common vision and mission that value peer support. With this support, informal leaders or "internal champions" may be encouraged to support consumers to participate on advisory boards. Furthermore, they may encourage colleagues to develop skills to participate in research and continued education regarding the impact of mutual aid and its benefits and challenges.

    Despite the lack of rigorous evaluative research about peer support, the writers suggest that the different types of peer support have varied success and individual worth because they are based on people that are just as complex and unique. Therefore, we contend that as much flexibility and opportunities need to be available to allow consumers to make choices about the "best fit" between peer support services and their needs. With collaborative research that evaluates the effectiveness, the questions related to "What makes people join or drop out of groups?" and "How can we make mutual aid therapy more accessible and acceptable to consumers?" will be answered.

    Conclusions
    Based on our literature review and the interviews with stakeholders, the writers suggest CMHA embark on partnerships that will work toward a dynamic and comprehensive plan for peer support. Through sharing, coordinating, and complimenting work with other services, CMHA can offer consumers practical and accessible peer support services that contribute to fulfillment and self-actualization.

    Finally, the writers would like to acknowledge and thank all the stakeholders interviewed for contributing to this summary with their ideas, education, and personal and professional experiences.

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    References

    Bjorklund, R. & Pippard. (1999). The mental health consumer movement: Implications for rural practice. Community Mental Health Journal, 35(4), 347-359.

    Campbell, R. (1981). Health education as a basis for social support. The Gerontologist, 21(6), 619-627.

    Carling, P. (1995). Return to community: Building support systems for people with psychiatric disabilities. pp. 89-104 & 180-202. New York: The Guildford Press.

    Chamberlain, J., Rogers, J., & Sneed, C. (1989). Consumers, families, and community support systems. Psychosocial Rehabilitation Journal, 12(3), 93-106.

    Chesler, M. Participatory action research with self-help groups: An alternative paradigm for inquiry and action. (1991). American Journal of Community Psychology, 19(5), 757-768.

    Citron, M, Solomon, P., & Draine, J. (1999). Self-help groups for families of persons with mental illness: Perceived benefits of helpfulness. Community Mental Health Journal, 35(1), 15-30.

    Constantino, V., & Nelson, G. (1995). Changing relationships between self-help groups and mental health professionals: Shifting ideology and power. Canadian Journal of Community Mental Health, 14(2), 55-70.

    Davidson, L, Chinman, M., Kloos, B., Weingarten, R., Stayner, D., & Tebes, J. (1999). Peer support among individuals with severe mental illness: A review of the evidence. Clinical Psychology: Science and Practice, 6(2), 165-187.

    Dixon, L, Krauss, N., & Lehman, A. (1994). Consumers as service providers: The promise and challenge. Community Mental Health Journal, 30(6), 615-625.

    Emerick, R. (1990). Self-help groups for former patients: Relations with mental health professionals. Hospital and Community Psychiatry, 41(4), 401-407.

    Everett, B., Martin, N., & Moore, P. (1995). You are not alone. Canadian Journal of Community Mental Health, 14(2), 91-100.

    Farqharson, A. (1995). Developing a self-help perspective: Conversations with professionals. Canadian Journal of Community Mental Health, 14(12), 81-89.

    Felix-Ortiz, M., Salazar, M., Gonzalez, J., Sorensen, J., & Plock, D. (2000). A qualitative evaluation of an assisted self-help group for drug addicted clients in a structured outpatient treatment setting. Community Mental Health Journal, 36(4), 339-350.

    Felton, C., Stastny, P., Shern, D., Blanch, A., Donahue, S., Knight, E., & Brown, C. (1995). Consumers as peer specialists on intensive case management teams: Impact on client outcomes. Psychiatric Services, 46(10), 1037-1044.

    Fine, R., Hammett, C., Sernick, D., & Steinhouse, K. (1995). The self-help clearinghouse of Metropolitan Toronto: Reflections on seven years of survival and beyond. Canadian Journal of Community Mental Health, 14(2), 113-121.

    Fisher, D. (1994). Health care reform based on an empowerment model of recovery of people with psychiatric disabilities. Hospital and Community Psychiatry, 45(9), 913-915.

    Froland, C., Brodsky, G., Olson, M., & Stewart, L. (2000). Social support and social adjustment: Implications for mental health professionals. Community Mental Health Journal, 36(1), 61-75.

    Goering, P., Durbin, J., Foster, R., Boyles, S., Babiak, T., & Lancee, B. (1992). Social networks of residents in supportive housing. Community Mental Health Journal, 28(3), 199-214.

    Goldman, C. & Lefley, H. (1991). Working with advocacy, support, and self-help groups. Chap. 20 in Practicing psychiatry in the community: A manual. pp. 361-386.

    Gottlieb, B. (1995). Commentary- Research on mutual aid and social support: Progress and future directions. Canadian Jounal of Community Mental Health, 14(2), 229-234.

    Hall, G. & Nelson, G. (1996). Social networks, social support, personal empowerment, and the adaptation of psychiatric consumers/ survivors: Path analytic models. Social Science and Medicine, 43(12), 1743-1754.

    Humphreys, K. & Rappaport, J. (1994). Researching self-help/ mutual aid groups and organizations: Many roads, one journey. Applied & Preventative Psychology, 3: 217-231.

    Jacobs, M. & Goodman, G. (1989). Psychology and self-help groups: Predictions on a partnership. American Psychologist, 44(3), 536-545.

    Kaufman, C., Ward-Colasante, C., & Farmer, J. (1993). Development and evaluation of drop-in centers operated by mental health consumers. Hospital and Community Psychiatry, 44(7), 675-678.

    Kraemer Tebes, J. & Tebes Kraemer, D. (1991). Quantitative and qualitative knowing in mutual support research: Some lessons from the recent history of scientific psychology. American Journal of CommunityPsychology, 19(5), 739-756.

    Macias, C., Jackson, R., Schroeder, C., & Wang, Q. (1999). Brief report: What is a clubhouse? Report on the ICCD 1996 survey of USA clubhouses. Community Mental Health Journal, 35(2): 181-190.

    Madara, E. J. (1990). Maximizing the potential for community self-help through clearinghouse approaches. Prevention in community mental health centers. pp. 109-138. Denville, NJ: The Haworth Press Inc.

    Martin, C. (2000). A proposal to evaluate the peer support worker role on assertive community treatment teams (ACTT) in Toronto. Thesis proposal to the University of Toronto, Faculty of Social Work, compliments of the author.

    Maton, K.I., & Salem, D.A. (1995). Organizational characteristics of empowering community settings: A multiple case study approach. American Journal of Community Psychology, 23(5), 631-656.

    Mead, S & Copeland, M. (2000). What recovery means to us: Consumers’ Perspectives. Canadian Mental Health Journal, 36(3), 315-328.

    Mowbray, C.T., Moxley, D.P., Thrasher, S., Bybee, D., McCrohan, N., Harris, S., & Clover, G. (1996). Consumers as community support providers: Issues created by role innovation. Community Mental Health Journal, 32(1), 47-67.

    Nikkel, R.E., Smith, G., & Edwards, D. (1992). A consumer-operated case management project. Hospital and Community Psychiatry, 43(6), 577-579.

    Noordsy, D.L., Schwab, B., Fox, L., & Drake, R.E. (1996). The role of self-help programs in the rehabilitation of persons with mental illness and substance abuse disorders. Community Mental Health Journal, 32(1), 71-81.

    Norton, S., Wandersman, A., & Goldman, C.R. (1993). Perceived costs and benefits of membership in a self-help group: Comparisons of members and nonmembers of the alliance of the mentally ill. Community Mental Health Journal, 29(2), 144-160.

    Paulson, R., Herinckx, H., Demmier, J., Clarke, G., Cutler, D., & Birecree, E. (1999). Comparing practice patterns of consumer and non-consumer mental health providers. Community Mental Health Journal, 35(3), 251-269.

    Powell, T.J. & Cameron, M.J. (1991). Self-help research and the public mental health system. American Journal of Community Psychology, 19(5), 797-805.

    Rogers, E.S., Chamberlin, J., Ellison, M.L., & Crean, T. (1997). A consumer-constructed scale to measure empowerment among users of mental health services. Psychiatric Services, 48(8), 1042-1047.

    Salzer, M.S., McFadden, L., & Rappaport, J. (1994). Professional views of self-help groups. Administration and policy in mental health, 22(2), 85-95.

    Schubert, M.A. & Borkman, T.J. (1991). An organizational typology for self-help groups. American Journal of Community Psychology, 19(5), 769-787.

    Segal, S.P., Redman, D., & Silverman, C. (2000). Measuring clients’ satisfaction with self-help agencies. Psychiatric Services, 51(9), 1148-1152.

    Segal, S.P., Silverman, C., & Temkin, T. (1995). Measuring empowerment in client-run self-help agencies. Community Mental Health Journal, 31(3), 215-227.

    Solomon, P. (1994). Response to "Consumers as service providers: The promise and challenge." Community Mental Health Journal, 30(6), 631-634.

    Stewart, M.J. (1990). Professional interface with mutual-aid self-help groups: A review. Social Science Medicine, 31(10), 1143-1158.

    Taylor, R.L., Lam, D.J., Roppel, C.E., & Barter, J.T. (1984). Friends can be good medicine: An excursion into mental health promotion. Community Mental Health Journal, 20(4), 294-303.

    Trainor, J. & Tremblay, J. (1992). Consumer/ survivor businesses in Ontario: Challenging the rehabilitation model. Canadian Journal of Community Mental Health, 11(2), 65-71.

    Todres, R. (1995). Self-help/ mutual aid clearinghouses and groups in Canada: Recent developments. Canadian Journal of Community Mental Health, 14(2), 123-130.

    Warner, R. (1996). Response to "The role of self-help programs in the rehabilitation of persons with severe mental illness and substance abuse disorders." Community Mental Health Journal, 32(1), 83-86.

    Wintersteen, R.T. & Young, L. (1998). Effective professional collaboration with family support groups. Psychosocial Rehabilitation Journal, 12(1), 19-31.

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