My Thoughts on Self-management for Stroke.

Sharon D. Anderson
Stroke Survivors Tattler

Stroke specific self-management programs are a research topic in the United Kingdom and Australia.  As governments try to reduce spending, health and social or community care budgets are reduced. Self-management seems like an idea whose time has come as resources become even scarcer.  So how will self-management work in stroke?

I come to this as wife of a stroke survivor and a PhD student. I returned to university after John’s stroke because I hoped to make getting on with the rest of your life easier for stroke survivors and families.  Certainly as I wrote about in my masters, post stroke communication to survivors and families can be improved:  How Effective Communication of Information Is Crucial to Restructuring Post-Stroke Life.  I also think that navigators would be useful - Community Navigation for Stroke Survivors and Their Care Partners: Description and Evaluation. I believe that stroke self-management programs would be useful for stroke survivors and their families. So much so, that I helped instigate Dr. Kate Lorig’s visit to Ottawa to speak a combined conference for Professionals, Stroke Survivors and Families in Ottawa.  Janet McTaggart and several stroke survivors from the Stroke Survivors Association of Ottawa took Dr. Lorig’s Chronic Disease Self-Management course.

Self-management programs increase self-efficacy and help people to take control of their health.  The programs focus on the things that people can control—the amount of exercise we do, the food we eat, and the medications that we take. The groups are run by a professional and a peer with a chronic disease, so you get professional and practical advice.   Meeting other people with the same condition is useful too.  After six or eight weeks, some of the people become friends. Making friends and increasing your social network may be one of the best ways to improve your health.

Despite my enthusiasm, I have a couple of concerns. First, stroke self-management should not be a substitute for other services as health programs downsize. I believe that communication with stroke survivors and their families can and should be improved. Research by William Levack in New Zealand shows that goal setting with stroke survivors could be significantly improved and that most of the time families are not included in goal setting.  From my current research with stroke survivors and their spouses, I am hearing similar complaints. Wives and husbands have been peripheral to information and goal setting, thus are uncertain about how to manage once the survivor is home. Navigators to find scarce services and support would still be useful. It is well documented that stroke survivors do not have access to rehabilitation that would improve their functioning once they are discharged from hospital.

Second, self-management implies that the stroke survivor can self-manage stroke by themselves. There are many survivors who do self-manage and do a stellar job.  However, there are many more that don’t. Just as we now know that an acute stroke management team and dedicated stroke rehabilitation team produce better results, shouldn’t we be encouraging team approach after discharge home to produce equally stellar outcomes? Is self-management even the correct name for long-term management of stroke? The stroke survivors in my masters research told me that It Takes A Community To Manage Stroke.

So these are my thoughts—it will be good to hear yours in the Feb 10th #strokerecovery Tweet-chat.   The March Tweetchat will be on technology.