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The Self-Help Resource Centre's Empowering Stroke Prevention Project-- A Peer Support Strategy for Chronic Disease Prevention

I Introduction

Self-help, empowerment, and peer support are key health promotion strategies that have been used to support and sustain behaviour change in areas such as smoking cessation and maintaining healthy weights. They have also been used as part of rehabilitation processes, components of care, and treatment programs for several chronic diseases. Although these strategies are effective in addressing certain risk factors for chronic disease, to date self-help and peer support have not been widely used as part of comprehensive approaches to chronic disease prevention.

Stroke is one of the leading causes of death and disability in Canada, affecting a wide variety of populations. As outlined by the American Stroke Council (Goldstein et al., 2001) risk factors for stroke may be classified as "non-modifiable" (i.e., age, race/ethnicity, sex, and family history), "modifiable" (i.e., hypertension, smoking, and diabetes) and "potentially modifiable" (obesity, physical inactivity, poor diet/nutrition, and drug and alcohol abuse). Depending on program funding, size, and scope, stroke prevention efforts range from television commercials on signs and symptoms to mass mailings, web sites, community education seminars, and information pamphlets (MacKay, 2003).

II Background

In 2003, the Self-Help Resource Centre (SHRC) was funded by the Ministry of Health and Long-Term Care to investigate how self-help and empowerment strategies were being used to prevent stroke. As part of the funding process, a review of the literature published between 1995 and 2003 was conducted on self-help/mutual aid, empowerment, adult education, and risk factors for stroke (Poole, 2003).

The review highlighted a number of issues:

1. Low levels of social support seem to increase an individual's risk of stroke (Agewall, 1998; Rozanski, Blumenthal, and Kaplan, 1999).

2. Adult education and self-help/mutual aid are valuable but neglected tools in stroke education.

3. Practitioners need to think more broadly in terms of tools and techniques (Hanger and Wilkinson, 2001).

In particular, the literature review found that self-help/mutual aid strategies were effective in supporting those in at-risk communities or communities with high levels of unemployment, poverty, and social isolation--all reported in the literature as contributing risk factors/conditions for stroke. It was also found that although social support plays an important role in helping to prevent chronic disease, strategies contributing to social support, such as self-help and empowerment, had not been used comprehensively to help prevent stroke.

Based on the literature review and an extensive gap analysis of stroke education and prevention programs conducted by Gillian Mackay (2003), the SHRC secured funding from the Ministry of Health and Long-Term Care and The Change Foundation and created The Empowering Stroke Prevention Project.

A one-year pilot, the goal of the project was to help prevent stroke in at-risk and under-served communities in Ontario by using peer support, self-help, and empowerment strategies. There were three main objectives:

* To develop a holistic and empowering health promotion model for stroke prevention that incorporates self-help and peer support strategies

* To educate members of at-risk communities about the modifiable and potentially modifiable risk factors associated with stroke

* To develop educational materials relevant to and validating of participants' life experiences and perspectives

This article will discuss the pilot project, its outcomes, and next steps.

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III Process

The first step involved seeking out (through on-line networks and outreach) and then establishing partnerships with organizations to pilot the project in three Ontario communities (two urban and one rural). The project partners were the London Community Resource Centre, Nepean Community Resource Centre (piloting the project in the rural wards of Osgoode and Rideau), and the Delta Family Resource Centre in Toronto.

The next step was outreach to at-risk community members in each pilot site. Outreach methods included posting flyers in community agencies, libraries, shopping malls, and community centers; word of mouth; referrals from agency staff; and announcements on community television. It was also made clear to all prospective participants that they would receive child care if needed, an honorarium for their time, and experiential knowledge.

Draft educational materials on stroke prevention were then co-developed with these individuals using focus groups and informal meetings. These materials were also used as a foundation for the development of a draft training curriculum on community stroke prevention. From this pool of community consultants, volunteers were then recruited to test the training curriculum and become lay health promoters (volunteer peer facilitators) by participating in a number of local workshops.

In these workshops, participants strengthened their knowledge of stroke prevention and honed their facilitation and community organization skills. The workshops were well received and provided an opportunity for participants to share their knowledge, life experiences, ideas, and skills --key principles of self-help. New friendships began to emerge as participants explored not only stroke prevention basics but also some of the challenges that individuals and communities face in trying to live healthy lifestyles and how to work towards overcoming them.

Evaluation activities occurred during each stage of the project. An independent focus group was conducted by the project evaluator in August 2004 to enhance the first draft of the stroke prevention educational materials. Additional information was collected from surveys distributed to workshop participants and from information interviews with participants. Overall, the evaluation results from the training workshops for lay health promoters found the training curriculum and delivery in its existing form to be thorough, useful, and easy to understand. With support and encouragement from project staff and local organizations, lay health promoters felt empowered to be able to plan activities that would help prevent stroke in their own communities. Final evaluation activities are planned for mid 2005.

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IV Outcomes

The project produced three deliverables:

* a stroke prevention educational booklet, co-developed with community members;

* a complementary training manual for use by service providers to train volunteer peer facilitators on stroke prevention; and

* a group of lay health promoters, trained with the skills to provide peer support, information, and outreach in their communities.

The educational booklet covers topics such as stroke warning signs and risk factors as well as information on ways to reduce risk through physical activity, healthy eating, quitting smoking, building strong social support networks, and other healthy activities. The training manual shows community members how to translate this information into local action through discussion forums, walking clubs, and circles of support. Examples of prevention activities are explained step by step, from planning an activity to putting it into action and evaluating it. The guide also provides information on facilitation skills, working with groups, adult education principles, and how to promote prevention activities using local media.

Over 30 volunteers completed the training workshops to become lay health promoters. In collaboration with local health organizations, they were then supported in organizing their own stroke prevention activities. These lay health promoters, including immigrants, refugees, single mothers, older adults, and individuals with mental health issues, planned and carried out activities that included community meetings, discussion groups, outreach to seniors, and popular theatre on aging well.

In terms of the lay health promoters, feedback to date from the team suggests the project was useful as it provided participants with more information on stroke and its prevention, access to mutual support from others in similar life circumstances, and opportunities for skill development and community organizing. Given many participants were at-risk for stroke themselves by virtue of their ethnicity, socio-economic status, existing health conditions, or limited social supports, many found the opportunity to learn about stroke signs and symptoms particularly valuable. One 21-year old mother of two told this story at the launch of the education materials in late 2004:

"I decided to get involved because I wanted to get more information...for my family. But then it ended up being for me as well. At the meeting, we were talking about signs and symptoms and when I heard all the symptoms for the mini-stroke or TIA...I realized I was having a lot of those symptoms, so the very next day I went to my family doctor. I said, 'I'm having these (symptoms), like weakness and sudden blurry vision and headaches.' Although he tried to tell me there was nothing wrong, after a few tests, he was really shocked and said, for someone who is so young you should not be having these now. But I was, and honestly without the workshop, I would not have known it."

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V Lessons Learned

We found that responding to the voices of diverse communities is essential and requires both an openness and willingness to adapt materials and programming, as well as recognition of the knowledge, skills and capacity that exist in these communities. Periodically, planned agendas needed to be revamped to ensure the realities of participants' lives were acknowledged and objectives were being met in the most inclusive, participatory environment possible. So, in place of a PowerPoint presentation, we used storytelling. Instead of a discussion about physical activity, we danced around the room, and when participants arrived for an evening workshop with their children, we provided child care, started the "work" over dinner, and made sure everyone got a doggie-bag full of nutritious food. Similarly, when some participants worried about how they would travel to and from the workshop site with their children at night, project staff rented a van and picked everyone up, ensuring participation and after-hours safety in a neighbourhood with high crime.

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VI Next Steps

The project helped to demonstrate that self-help and empowerment strategies are appropriate and effective ways to engage at-risk and underserved communities in health promotion and the prevention of chronic diseases, including stroke.

Final evaluation activities will assess how the lay health promoters continued to apply the stroke prevention training into practice in their communities and what additional supports, training, and resources they may need. Experience has suggested that potential adopters of this health promotion model would benefit from SHRC support. Unfortunately, specific project funding ended in December 2004, limiting the extent of administrative and specialized support that SHRC can offer. Yet, SHRC remains hopeful of being able to continue this kind of ground-breaking work with communities that seem to benefit most and encourages public health units and community health centres to use and adapt this health promotion model in their chronic disease prevention work and beyond.

VII References

Agewall, S., Wikstrand, J., and Fagerberg, B. (1998). Stroke was predicted by dimensions of quality of life in treated hypertensive men: Stroke, 29: 2329-2333.

Goldstein, L. et al. (2001). Primary prevention of ischemic stroke: A statement for healthcare professionals from the Stroke Council of the American Heart Association. Stroke, 32: 280-299.

Hanger, C. and Wilkinson, T. (2001). Stroke education: Can we rise to the challenge? Age and Ageing, 30: 113-114.

MacKay, G. (2003). Availability of Educational Materials for the Public on Primary Stroke Prevention that Incorporate Self-Help, Empowerment and/or Mutual Aid Approaches. Toronto: Self-Help Resource Centre. Accessed March 17, 2005.

Poole, J. (2003). Self-Help, Mutual Aid, Adult Education, Empowerment and Risk Factors for Stroke: A Review of the Literature 1995-2003. Toronto: Self-Help Resource Centre. Accessed March 17, 2005.

Rozanski, A., Blumenthal, J., Kaplan, J. (1999). Impact of Psychological Factors on the Pathogenesis of Cardiovascular Disease and Implications for Therapy. Circulation, 99 (16): 2192-2217.