Why focus on stroke? According to the Canadian Stroke Network, a stroke occurs every ten minutes. Each year, approximately 50,000 Canadians suffer a 'brain attack' that will lead to death or serious disability. And survivors live with the knowledge that they are at high risk of another stroke, which may be more devastating or deadly than the previous one.

The financial and social costs are enormous. Stroke costs the Canadian economy $2.7 billion every year. Fewer than 50 per cent of stroke patients return to work, so income, productivity, and tax contributions are lost. One year after a family member's stroke, 50 per cent of caregivers develop an emotional illness. Stroke victims can suffer physical, mental and emotional disabilities, and may need assistance with any or all aspects of daily life. And yet, stroke prevention is not "on the radar" for many, if not most, of us.

What do we mean by self-help in this context? Self-help is not limited to support groups or books. Self-help is when solutions and approaches for a problem come from the people affected by it. People share information, ideas, strategies, experience, and resources, and everyone gains. Solutions come from the people dealing with the problem, rather than being imposed from the outside or "from above". Because they come from the people who are living with the issue, they have very good odds of working.

What can self-help contribute to wellness? Most people think of self-help as an "after the event" approach to health issues. They know local or online groups formed around a particular health issue (Alzheimer's, autism, cancer, etc.), to help both those who suffer from it and those who care for them.

However, self-help can also be a powerful tool to help people change their lives, for example, when they want to quit smoking, adopt healthier lifestyles, or lose weight. It's not enough to know WHAT you want to accomplish. People need help in dealing with whatever particular obstacles are in their way, whether it is lack of income, lack of time, difficulty maintaining motivation, difficulty overcoming old habits, difficulty constructing new ones, or any other factor that stands in the way of success. And the best people to help them are the ones who are struggling with the very same issues.

Highlights of the Self-Help Resource Centre Literature Review on Self-Help and Stroke Prevention

• In the US, 8 to 11 million people participate in self-help groups each year, average member is 43, male and white (Fetto 2000)
• Stroke risk factors, incidence and mortality are higher for non-whites, especially those who are African-American and Hispanic (Bradley et al. 2002, Claiborne Johnston et al. 2001, Din 2002)
• People with lower socio-economic status are likely to be at higher risk for stroke and will also receive poorer rehabilitative care (Kapral et al. 2000, Kunst et al. 1998, Redfern et al 2000, Sayler et al. 2001).
• Risk reduction programs that incorporate culturally specific forms of social support and mutual aid (ie. native healing circles, African American lay preachers) are generally more successful with ethnic communities than those that do not (Bates 2000, Kieffer et al. 2002, Napoli 2002, Resnicow 2000, Voorhees et al 1996, Yanek 2001)
• Low levels of social support increase risk of stroke (Agewall 1998, Rozanski 1999)
• Not only are strong supportive social systems vital for the well-being of seniors who have had a stroke, but in Canada they may also operate indirectly to reduce further strain on the healthcare system (Clarke et al. 2002)
• Patient education programs directed at reduction of feelings of helplessness and improved empowerment may result in considerably greater cost containment and better outcomes in stroke (Pincus et al 1998)
• The Trevose self-help group in Pennsylvannia is one of the most successful obesity programs in the US, with most members able to keep 15% of weight off for upwards of five years (Latner et al. 2002)
• Empowerment may significantly assist individuals with mental health problems not only with their diagnoses but also their obesity (Ekpe 2001)
• Individuals treated in 12-step programs for alcohol abuse incur long-term health care costs up to 64% less than those treated in cognitive behavioural programs (Humphreys and Moos 2001)
• Self-help/mutual aid/peer support is the core component of the national smoking cessation support service in the UK (Moore 2000)
• African Americans who have sickle-cell disease (a risk factor for stroke) and become highly involved in self-help groups report reduced emotional upset and decreased interference of the disease with their work and relationships (Nash & Kramer 1993 cited in Humphreys 1997).
• Because of their knowledge and personal experience, support groups should be viewed as important partners in community stroke education (Weltermann et al. 2000)
• Caregivers of stroke patients are willing and able to use on-line support (Pierce 2002)
• Adult education and self-help/mutual aid are valuable but neglected tools in stroke education; practitioners need to think more broadly in terms of tools and techniques (Hanger and Wilkinson 2001)
• Practitioners and policy makers need to recognize the importance of the public’s growing use of self-help in stroke prevention and care as well as the cultural realities of patients’ lives (Greenland 1996) TOP