“I Need Information”

When stroke survivors and their families are asked what they need immediately after a stroke,  a few months after they are discharged from hospital, and even many years post stroke, the majority will answer — “I need more information.”  In Thora Hafsteinsdottir’s recently published (2011) review of studies asking stroke survivors and their families what  information  they needed — they found:

• Stroke patients and caregivers reported many and diverse educational needs, 
• Stroke patients and caregivers information needs often were not met. 

Stroke survivors and families want information that is pertinent to their situation and about :

1. all aspects of stroke , causes, prevention, clinical knowledge about stroke,
2. stroke treatment and rehabilitation,
3. living with stroke at home  and in the community — moving and lifting, nutrition, psychological changes, exercises. 

Why should information be so important to stroke survivors and their families? 


Before stroke survivors and families can decide how to tackle their problems, they need understandable and complete information about the nature of the problem and the treatment alternatives that are available or will be available in the near future.

Economists know that people and businesses with the most accurate information, pertinent to their needs make more money and have more power.  But economists also know that the knowledge people and businesses need to make rational decisions rarely exists in joined-up way.  Most often the knowledge people need to solve problems is dispersed. There are bits of incomplete and frequently contradictory knowledge in many places.   People have to sift through it and decide what is right for them.

Anybody who has ever tried to buy anything — a car, a house, or now a walker or scooter knows that you can invest considerable time figuring out what you need  to know about the product and then  more time figuring out what is  fair and reasonable deal.   Then -- you don’t know if the sellers are offering you a fair deal.  It is exactly the same problem after a stroke.

Finding relevant information is a problem for most stroke survivors.  For example, Cathy asked the neurologist about her anxiety, but he was only concerned with her physical function.  For Cathy, relevant information came from the Yahoo Groups stroke list.  People suffer needlessly—as Cathy says, “I felt so lonely for so long   and it wasn’t necessary, if only someone had explained what had happened to me.  All I knew was that I had lived through a stroke and I could walk and talk.” Read Cathy’s Story.

What information do you need?

Tell us what kind of information you need. What would you like to see on the blog?  Email us — or tell us in the comment section.

References

Hafsteinsdottir, T.B., Vergunst, M., Lindeman,E.,  Schuurmans, M., (2011) Educational needs of patients with a stroke and their caregivers: A systematic review of the literature. Patient Education and Counseling, 85; 14–25.