A Vision and Mission for Peer Support- Stakeholder Perspectives
Doris Leung, RN,MN
Lara De Sousa, BSc. O.T.
Leung, D. & DeSousa, L. (2002) A vision and mission for peer support - stakeholder
perspectives. International Journal of Psychosocial Rehabilitation. 7, 5-14.
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.
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).
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:
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?
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.
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:
(clubhouses & drop-ins)
-employment of consumers
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.
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
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"
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
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.
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.
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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