In our Living Well department in the February/March 2018 issue, we describe how the concept of self-efficacy helps people with neurologic diseases manage their condition (bit.ly/NN-TakeControl). In this online exclusive, we talked to Lisa M. Shulman, MD, FAAN, professor of neurology at the University of Maryland, editor-in-chief of the American Academy of Neurology's Neurology Now Books™ series, and a member of the Neurology Now editorial board, about why self-efficacy is so important for people with chronic progressive disorders.
What is self-efficacy?
It's a personal belief that you can accomplish the tasks necessary to manage your health. It implies a sense of confidence and a sense of control.
Why is self-efficacy so important?
Research shows that it's the single most important component of managing a chronic disease, even more important than education and self-management skills such as knowing how and when to take your medication.
That sounds counterintuitive. How does it work?
Let's envision some scenarios. You have one person who has a terrific sense of knowledge and understands everything about his disease, but feels completely overwhelmed and out of control. He feels like his diagnosis is something he cannot manage. And it ends up limiting his life. On the other end, you have someone who feels totally confident but doesn't actually know anything about his disease or how to manage it and gets himself into all sorts of trouble. He may not take his medication at the right time or on the right schedule, or he may ignore symptoms. Then you have a third person who has a good measure of knowledge, skills, and self-efficacy. She has a realistic perspective on what she can and cannot manage.
In what other ways does self-efficacy help?
A person who believes in her ability to manage her disease can make good judgments about symptoms, such as when they require a trip to the emergency department, a call to the doctor, holding off on another dose, or no special action. She also understands the kinds of situations that make her vulnerable. Not only can she control her disease, she wants to control it.
You've been the editor the AAN's Neurology Now Books™ series for more than a decade. Has self-efficacy always been a part of the series?
Yes. Self-efficacy has always been an important part of my own clinical practice, so it was something I brought to the table from the start. Each book presents material and patient anecdotes that reinforce the concept of self-efficacy.
What are some examples of self-efficacy in the series?
Every chapter of each book addresses some aspect of managing a chronic disease and provides the tools to do so. This allows readers to practice self-efficacy on different levels and in different ways. So, for example, we explain how to communicate better with your health team, how to disclose your diagnosis to others, how to negotiate social situations, how to travel more easily, how to incorporate exercise into your routine, and how to manage your symptoms and medications. We provide many different opportunities to improve your self-efficacy skills.
The books also include patient anecdotes. How do these help reinforce self-efficacy?
A story is always a more effective way to make a point than a list or a table. So, for example, instead of creating a table of symptoms for a particular disease, we tell a story of one patient's experience with a specific symptom. That immediately personalizes it and makes it relatable. Readers who are experiencing similar symptoms feel validated and are more likely to discuss the symptom with their doctor, knowing that they aren't the only ones to experience it.
How else do the patient anecdotes help?
Often, they help readers identify symptoms they didn't know were part of the disorder or a legitimate thing to report. They may also give readers the courage to discuss an embarrassing problem with their doctor. The ability to relate to the patient's story in the book gives readers the confidence to address their own symptoms.
Confidence is a big part of self-efficacy. How does that help in managing a chronic disease?
Confidence and self-acceptance are two of the most important components of managing a chronic condition, and they are often connected. The more accepting we are of ourselves with all of our imperfections, the more confidence we'll have in managing those imperfections. And we can do amazing things. For instance, when symptoms flare up in public, confident people don't get embarrassed or apologetic. They may say to others, "Don't get flustered. This is just my Parkinson's or my multiple sclerosis (MS), or whatever the disease is."
A great example of this was the late U.S. Attorney General Janet Reno, who had Parkinson's disease. She developed a really big tremor, and when she would testify in Congress it often exacerbated her tremor. Invariably, some member of Congress would ask if she needed to take a break. She would explain that the tremor was bothering them more than it was bothering her. The ability to say that with such ease put everyone else at ease.
Self-efficacy also confers a sense of control. How does that help in managing chronic conditions?
If you don't feel like you have a sufficient sense of control, you're far less likely to try anything. Everything feels like a crap shoot, which can be paralyzing. If you feel in control and believe in yourself, you understand more clearly what you're capable of and can make decisions accordingly, and the likelihood of a successful outcome is that much greater.
It sounds as though self-efficacy builds on itself. Is that true?
Absolutely. Each time you succeed, you have a stronger sense of yourself and your abilities. Every time you try something new, you are reinventing yourself. You may initially think an activity is too strenuous, or you may worry that it's not safe or that people with your disease don't do those things. After determining that it's safe, you try it and you're able to do it. And that redefines what a person who has had a stroke or MS or epilepsy can do.
To check out the titles available in the AAN's Neurology Now Books™ series or order a book, visit aan.com/view/NeurologyNowBooks.