Blog for April 14 Stroke Recovery Tweet Chat: Patient Engagement

Sharon D. Anderson
Stroke Survivors Tattler

March 16 / 2015

Carolyn Thomas (2013) charges that it’s a stressful time to be a patient these days.  Patients are expected to be empowered and engaged in managing our own health.  Word at some patient engagement conferences is that patients are apathetic: “If only patients were more engaged, more knowledgeable, more compliant, more trusting, more prepared, ask more questions, etc” patients and the health systems would be healthier (Wilkins, 2013).

Never mind that you have just had a stroke and have  been discharged home with several vials of medication,  a cane or walker,  and perhaps a few pamphlets or fact sheets with your diet and  exercise regimes on them.  Moreover, you were likely discharged home earlier than you expected to be.  The notion is that stroke survivors and their care partners need more education and more support to be engaged patients.

Wilkins (2013) also suggests that patients need to be taught to engage. Below is a graphic of the link between teaching patients to communicate and outcomes.  Certainly, these are the outcomes that stroke survivors, care partners, and health professionals want.



Wilkins (2023), however, believes the onus should be on health professionals to facilitate patient engagement. He refers to a significant body of research which recommends training for health and community professionals to facilitate patient engagement.  Thus the emphasis is on education to activate the health professionals to encourage patients to tell their story, listen to patients, and then share decision making with patients.  As part of this process health professionals will learn to encourage patients to ask questions and make suggestions about their health.  Patient education for health professionals does work! There is lots of evidence to demonstrate that health professionals are happier and healthier when they have time to listen to and engage their patients.

Is patient engagement education for professionals and patients enough?

I argue there is not a problem with how patient engagement is conceptualized and neither is there a problem with how many health professionals engage stroke survivors and their families.  Although it can always be improved, I believe that most survivors and families are given information on stroke prevention and offered access to education programs like Living with stroke or self-management.   In my view, the problem is not patient engagement but with access to appropriate services and supports for stroke management.  I believe that you can’t engage stroke survivors and their care partners to manage their stroke recovery and health if they can’t access the appropriate services or the services are not available.

Professionals may underestimate the difficulty stroke survivors and their families have finding and accessing appropriate services in the community.   In 2000, Kevin Brazil and colleagues from McMaster University conducted telephone interviews with 34 family care partners and 53 service providers.  Both agreed that education about stroke recovery was most important. Providers however, underestimated the difficulty family caregivers had locating appropriate services in the community. Stroke survivors and their families cannot be engaged in managing their own stroke recovery if they don’t know what they need or where they can find it or it just isn’t there.   I think this continues to be a large part of the patient engagement conundrum.  Recently, I have been conducting interviews with stroke survivors and their spouses for my PhD dissertation.  In Alberta, Ontario, and British Columbia, all of these couples tell of the difficulty accessing services appropriate for their needs.

For example after discharge home, one survivor visited emergency over 6 times with all the symptom of what she thought was another stroke.  Each time after a complete battery of tests, this survivor was discharged home with instructions to follow up with the family doctor. This engaged patient did just that. The family doctor would discuss the symptoms and check medications.  This couple followed instruction to the letter.    Finally the couple decided that anxiety might be part of the problem and found a psychologist, on their own.  The psychologist suggested mindfulness training in addition to counselling.  “Emergencies are not set up to help survivors manage after the stroke” this survivor tells me.  The spouse added: “How much do all those emergency services and tests cost? Why is there nothing else for us in the community? Even our doctor didn’t really think about mindfulness.”  Another survivor tells similar story after receiving tPA.  After six days in hospital she was discharged home. She thought she was lucky not to have any physical disability, but her husband was troubled by her bizarre behavior.  For example, they went for coffee with another couple and she couldn’t figure out how to pay for it. She just gave the clerk a $50 bill and said: “Just give me the change.” Then she left her wallet on the counter beside the cash register. When she told about the incident in an online stroke group, one of her peers recommended she have a neuropsychological assessment.  Both she and her husband were amazed at the results. Not only was she unable to do simple math calculations, she had problems reading and understanding stories as well.

What is needed? 

Carolyn Thomas thinks that patients need more support to be engaged.  Wilkins believes that health professionals discourage patient engagement : “ How engaged or activated is a person going to be if what they have to say is interrupted, ignored or otherwise dismissed by busy, stressed  clinicians?  Is a patient going to share information or new skills they found on the internet with their physician if they are dismissed as a Googler?” I argue that you can’t engage patients if the services and supports are not accessible.

What is your Patient Engagement experience?  

Are you dismissed and ignored by your health professionals?  Or are you a health professional who is too busy to even think about engaging the patient? Do you have the time to engage patients/ care partners?

Can stroke survivors be engaged patients? Perhaps impairments make it too difficult?  Can survivors with aphasia be engaged patients?  Or would you like to engage survivors/ care partners more, but that the rehabilitation services stroke survivors/ care partners need are not affordable or the services are just not available or accessible?

So April 14, let’s talk about patient engagement:

• T1: Do you think stroke survivors/ care partners want to be and can be engaged to manage their own health? 
• T2: What might discourage stroke survivors/care partners from becoming an engaged patient? What might discourage health professionals from encouraging stroke survivors / care partners to  be engaged patients?
• T3: What skills and resources do survivors need to become engaged patients?  Are they accessible? 

References: 

• Brazil, K., Roberts, J., Hode, M., & VanderBent S.D. (2000). Managing the transition from hospital to home for family caregivers of stroke survivors. National Academies of Practice Forum, 2(4), 259-266.
• Thomas, C. (2013, May 28).  Patient Engagement? How About Doctor Engagement?
• Wilkins, S. (2013, April 1 ). Patient Activation Is Only Half the Solution – Physicians Need to Be Activated as Well.