Article: Sharon - Control after Stroke

Sharon - SSTattler

When I first came to the University of Alberta in 2008, I had the good fortune to hear David Butler-Jones, from the Public Health Agency of Canada and John Frank who was then at the Canadian Institutes of Health Research talk about empowering people to manage their health.  John Frank pointed out that he was raised in Saskatchewan where fruits and vegetables were preserved with sugar and salt, so the reductions in heart disease and stroke have much more to do with the availability of fresh fruits and vegetables than they do with any of the individual health interventions (e.g. bypass surgeries).

David Butler Jones introduced “control”, “If we could just ensure that people had control over their health, it would make a big difference.”  I really wondered what “Being in control” really means to the general population and people with stroke? Over the next few columns I want to talk about some of the issues around “control”.

Control over your own health or situation is an interesting concept, especially with anyone that is older and in stroke. With my mother and my husband, who had a stroke, I can see how people who are older or have a stroke are very easily positioned as being incapable or unable to manage their situation.

My mother is going to be 99 on January 20, 2013. While she knows exactly what medications she is taking and what the side effects are, recently when I took her to a walk-in clinic, the receptionist and health professionals addressed their questions to me, rather than to her.  They were not even attempting to give her control.  Even when I said,” I really don’t know   what medication Mom takes,  I am only her daughter. Can you ask her?”, these health professionals continued to  talk over her and speak to me about her health. So what about after a stroke?  How much control does the stroke survivor have? It likely depends on severity of the stroke and multiple other factors.

At first, with John’s stroke because it was severe (early in the right   middle cerebral artery) and he was unable to walk and talk, it would have been easy to assume he couldn’t make decisions and take compete control of his own health and condition.  Taking control, setting goals, and making decisions is the hallmark of our health system.

Over the next few articles I want to explore control after stroke. Today, I want to start with who makes decisions early after stroke.
Stroke rehabilitation often sets the tone for how stroke survivors will resume life.   So who makes the decisions in stroke rehabilitation? In one research article it is not the patient or their family. It is health professionals who set goals based on what the system has to offer. You might like to read their research about stroke patients and their families in New Zealand and see if it was similar to your experience.

Dr. William Levack and colleagues questioned ‘whether a ‘patient-centered’ approach and patient-centered’ current goal setting practices are even possible in inpatient stroke rehabilitation in the predominant funding and health system models.   He came to the conclusion that: “if rehabilitation teams wish to promote a more ‘patient-centered’ approach to goal setting, they will need to ensure they identify and address barriers to the engagement in goals deemed important to patients and their family. A clinical audit might be of benefit in this regard to examine the types of goals that are documented in IDT plans in order to examine whether the emphasis placed on various aspects of life with disability is appropriate for the service being provided. However, a truly ‘patient-centered’ approach to rehabilitation may require a significant shift in the way clinicians think about goal setting and rehabilitation. Clinicians would need to be open to the possibility that anything a patient or family member introduces during goal setting sessions should at least be considered for discussion. This might require clinicians to consider topics outside the traditional scope of inpatient rehabilitation. It may also require clinicians to consider goals that they deem to be ‘unrealistic’.

Were you able to take control and make decisions in stroke rehabilitation? Or Were your goals based on how much time you could spend in the stroke rehabilitation system?

References:

• William M.M. Levack, Sarah Gerard Dean, Richard John Siegert, Kath Margaret McPherson. Navigating patient-centered goal setting in inpatient stroke rehabilitation: How clinicians control the process to meet perceived professional responsibilities. Patient Education and Counseling 85 (2011) 206–213.
• William M. M. Levack, Richard J. Siegert, Sarah G. Dean, & Kath M. Mcpherson. Goal planning for adults with acquired brain injury: How clinicians talk about involving family. Brain Injury, March 2009; 23(3): 192–202.