Is knowing what’s best for diabetes the same as knowing what’s best for your patient?
Martha Funnell, MS, RN, CDE, FAAN, an expert in diabetes care and self-management, patient education and psychosocial support, discusses the challenges of behavior change and patient-professional communication strategies.
Q: Why is it important for health care professionals to consider the psychological and social needs of people with diabetes?
A: When diagnosed with diabetes, it is common to experience a lot of powerful emotions. Many people feel overwhelmed and experience feelings of anger, fear, shame, and guilt. I think that one of the most important things we can do as health care professionals is to let the person with diabetes know that they are not alone, and to help them find ways to cope with feelings of distress and negative emotions. We're not able to do the best job for our patients unless we address those issues.
Knowing what is best for diabetes is not the same as knowing what is best for a particular patient. I always tell patients that while I know about diabetes, they are the experts on themselves and what will work best in their own lives. All patients are different and cope with and manage their diabetes differently.
Q: How can feelings of distress and negative emotions interfere with the management of diabetes?
A: Depression and anxiety are first to come to mind, and those are true problems, and they're more common among people with diabetes. However, "diabetes-related distress" are the specific negative feelings that many patients with diabetes live with day-to-day. Diabetes is a very complex and not always cooperative disease that brings very specific feelings. It's easy for people with diabetes to feel frustration, powerless, overwhelming, and discouraged from dealing with and trying to manage a disease that doesn't always do what you and they think it should. Research has shown that diabetes-related distress is a real issue for people with both type 1 and type 2 diabetes.
The stigma associated with a diagnosis of diabetes is a burden that can contribute to distress and feelings of shame and judgment. The American Diabetes Association and the American Association of Diabetes Educators recently issued a consensus statement on language in diabetes care and education recommending that health care professionals use neutral, nonjudgmental language. For example, terms like "uncontrolled," or "noncompliant," are stigmatizing in that they are associated with being "lazy," or "unmotivated." We have to be careful in how we talk to and about people with diabetes and how we talk about the disease.
Q: What is the difference between depression and diabetes-related distress?
A: Depression is a clinical diagnosis and we have specific criteria and treatments (counseling and medications) for it.
Diabetes-related distress is more common. Most of the studies find that somewhere between 30 and 45 percent of people experience it at some time in their lives with diabetes. Diabetes-related distress has clear effects on A1C, self-management and self-efficacy.
We do not usually talk about diabetes-related distress with our patients because we think it will make them feel worse. However, I find that when I use its name and describe it with patients –they feel supported. Their fears and feelings of being overwhelmed, anxious, guilty, and angry are validated because they know that it's not as simple as thinking, "I should be strong and just get over it."
We're also learning from the DAWN2 study (The Diabetes Attitudes Wishes and Needs) and other studies that families also feel distressed, overwhelmed, afraid and angry about living with someone who has diabetes. They want to help, but do not always know how to be supportive. So, part of our job is to make sure that families have the education and skills they need as well.
Showing our willingness to open the door to a conversation about diabetes-related distress is an important thing we can do for our patients and their families.
Q: How can health care professionals start that conversation?
A: I usually start the conversation by asking, "How does diabetes affect your everyday life and your family's day-to-day life?" I realize that some providers may think, "I don't have time for that," and that's true we don't have the time. But the reality is that because these psychosocial issues can have an impact on diabetes outcomes, having the conversation is not a waste of time.
I always say at the start of an appointment, "I have some things that I need to do before we finish today but before we do that, I want to hear from you." This starting point lets my patients know that I am going to have to save some time during the visit to get to some "must-do" things, but I want to start with their issues, questions, and concerns. People are very aware that we don't have an hour to spend and we can't discuss everything in one visit, and I'm signaling that I care and the conversation can continue with the next appointment, too.
Q: We often hear phrases like, "facilitate behavior change in your patients." What does that mean?
A: What it really comes down to is listening. Keep in mind that you really cannot motivate other people, but you can inspire and support them. I think facilitating behavior change is really about asking:
- How is diabetes affecting your life?
- What's important for you in terms of managing your diabetes?
- What would help you?
Because if we're dealing with adults, diabetes isn't the first problem they've ever had in their lives, and so they have some experiences. Most of my patients do not find it helpful to say, "Well, you should exercise more, so you should get up early and go work out." That may work for you, but I know, personally, that that would never happen for me no matter how much I respect you.
As health care professionals, we need to ask questions and we need to listen. Not telling someone what to do can be hard. But is more effective to help patients set self-management goals that are self-directed – which means the patient comes up with the goal and the plan, or I-SMART goals (Inspiring and Important– Specific, Measurable, Achievable, Relevant, Time-specific). The value of setting goals is to help patients learn from the results – both those plans that work and those that do not.
Q: What is the most important message that you want health care professionals to know about supporting behavior change?
A: Make sure that patients and families receive diabetes self-management education and on-going support. Education is critical for helping patients to choose and make plans to make behavioral changes. It teaches patients to think about what to do and why it is personally meaningful to them. Then, don't be afraid to ask questions. Your patients do not expect you to fix every problem. They just need to have someone to help them problem-solve. We also need to help patients think about what will work for them. If it doesn't work in the patient's life, then it just doesn't work. The nice thing about diabetes is the wealth of options. So, we need to focus on how we can adapt a plan to fit the patient, rather than try and come up with ways to maneuver and manipulate patients to fit our plan for them.
What are some ways that you have engaged with patients to elicit behavior change?
About Martha Mitchell Funnell, MS, RN, CDE, FAAN
Martha Mitchell Funnell, MS, RN, CDE, FAAN is a nurse and Emeritus Research Scientist in the Department of Learning Health Sciences at the University of Michigan Medical School. She is a past President, Health Care and Education of the American Diabetes Association, past Chair of the National Diabetes Education Program and has received several national awards, including the Lifetime Achievement Award from the American Association of Diabetes Educators. She has more than thirty years experience as a Diabetes Educator with more than 175 publications and over 225 national and international presentations.