Listening to what patients with diabetes think about their disease and medications can be an important starting point for helping them improve their blood glucose control.
In this first interview of a three-part series on medication adherence, Dr. Olayinka O. Shiyanbola explains how health care professionals can help patients with diabetes better control their A1C levels by listening to them and helping them reframe negative beliefs and perceptions.
Q: How do you define medication adherence?
A: I like the World Health Organization definition, which is “the extent to which a person’s behavior – taking medication, following a diet, and/or executing lifestyle changes – corresponds with agreed recommendations from a health care provider.”
Q: Why is medication adherence an especially important issue for people with diabetes?
A: We know from the literature that at least 50% of patients don’t take their medicines as prescribed. Furthermore, individuals who are African American, Hispanic, or from other minority racial or ethnic groups are actually less likely than the general population to take their medicines. This is important because diabetes is more prevalent in these groups and so are the complications such as stroke, lower limb amputations, congestive heart failure, and kidney disease. One of the primary reasons why we see these disparities in diabetes prevalence is because of medication nonadherence.
Q: What are the barriers to medication adherence?
A: Adherence is related to the social determinants of health. It’s not a priority when a patient has housing or transportation concerns. Cost and lack of insurance coverage is also an issue.
Another major barrier is intentional medication non-adherence. A lot of racial and ethnic minority populations distrust the medicines. They don’t have a good therapeutic relationship with their providers, and they have misperceptions, not just about the medicines but about diabetes in general.
A lot of the work we’ve been doing is trying to understand some of those psychosocial reasons. Why is it that, even when the medicine is free or only costs $4, or where cost is not an issue and there are no social determinants of health issues, they still don’t take their medicines? We need to cognitively process what goes on in the minds of patients.
Q: Can you give examples of beliefs and perceptions that may cause people to decide not to take their medications?
A: We’ve seen concerns about side effects, effectiveness, safety, and long-term effects. Surprisingly, some people have even said that medicines cause diabetes.
A lot of beliefs that people hold around medication and diabetes are culturally influenced, based on what they’ve learned from family members or other people that they know. For example, in the African American populations that we’ve worked with, people have told us diabetes is a curse: “It’s something that was transferred down from my ancestors. They got diabetes because of the bad food they ate when they were enslaved, so that’s why I also got it.”
There is also this huge perception about how diabetes affects their cultural experiences, norms of eating, and ability to interact with family and friends. People told us how diabetes is stigmatized, and they can’t tell people they have diabetes: “This is our soul food. We all eat it together. How do I tell my family that I am a patient with diabetes, and I can’t eat that food, or that I have to take my medicines?”
Q: You are conducting research on a culturally adapted diabetes self-management program for African Americans. Can you tell us about it?
A: Peers Supporting Health Literacy, Self-Efficacy, Self-Advocacy, and Adherence (Peers LEAD) is a culturally tailored, group-based educational behavioral intervention that we piloted in Madison, Wisconsin, and then ran in Milwaukee. The purpose is not just to increase self-efficacy and build confidence in taking medicines, but also to reframe negative perceptions.
Peers LEAD is based on the information-motivation-behavioral model and the self-regulatory model of illness. Our participants were African Americans with type 2 diabetes whom we had screened for having challenges with taking medicines.
We had a pharmacist come in and talk about beliefs around medicines—explaining why medicines are necessary and addressing concerns about side effects or the effectiveness of medicines. We had a physician talk about A1C and what those numbers actually mean. Then we had a diabetes educator address myths and misinformation.
We spent time in open discussion: “Tell us, what have you heard about diabetes and what causes it?” Then we tried to reframe using motivational interviewing techniques and reframing language. We validate the belief; we don’t discount it or make it look like it’s an ignorant misperception. We might say, “We understand why you might think this way. However, we also know that there are so many reasons why a patient might get diabetes.” We link that belief to the biomedical model and spend time talking about diet and exercise.
Health literacy is a huge component of Peers LEAD. Our participants really appreciated the time we took to break down information using pictures and plain language, making sure that they clearly understood all they needed to know about their diabetes diagnosis and medicines.
Sometimes it was other people in the room who helped invalidate misperceptions. Someone might say, “That’s not what I heard from my own family.” It made it a little easier to address misperceptions when this was coming from trusted lay persons.
In addition to the group sessions, we brought in individuals we call ambassadors. These are African Americans who have type 2 diabetes and have been screened for being adherent to their medicines. We matched them on a one-to-one basis with a buddy. The ambassadors came to the group education sessions, and they also talked with their buddies on the phone, using a standardized manual, about beliefs and misperceptions. They provided positive role modeling—sharing their self-management strategies around medication use and talking about how to discuss medicines with family and friends and how to not let diabetes diminish their cultural experience.
Q: Where do you hope to take Peers LEAD?
A: Based on that pilot, we are now incorporating what we learned from Peers LEAD into Healthy Living with Diabetes, a six-week diabetes self-management education (DSME) program open to anyone with prediabetes or type 2 diabetes in Wisconsin and focused on topics such as diet and exercise. We call the integrated program Peers EXCEL.
We piloted Peers EXCEL with six people, and we have received funding to do a pilot randomized control trial comparing Peers EXCEL with the current DSME program. We’re in the process of screening participants for that trial.
Right now, African Americans are underrepresented in Wisconsin’s DSME program. We hope to reduce this disparity by integrating into the DSME program the cultural tailoring of Peers EXCEL, which addresses African American beliefs and misperceptions around medication use.
Q: What can health care professionals do to improve medication adherence among their patients?
A: A lot of misinformation can be avoided when providers take time to marry the biomedical model of what causes diabetes and their biological knowledge of medicines with the cultural beliefs and perceptions that the patient has.
Building trust is also important. If there is not that therapeutic alliance with the provider, the patient is going to go home and not trust the medicine they were prescribed. Using health literacy tools, while speaking in simple clear language, is a bridge to building trust.
People told us that they do not know what questions to ask their providers. So empowering patients to ask questions is also an important thing for healthcare professionals to do.
Q: How do health care professionals find the time for this kind of trust building and communication?
A: In the U.S. healthcare system, clinicians may not have that time. So, we need to increase referrals to diabetes educators and culturally tailored diabetes self-management programs.
Also, asking simple, open-ended questions, like, “What questions do you have?” might take two minutes. Incorporating teach-back into clinical visits (“If you went home, what would you tell your family member about what we talked about during our visit today?”) can be a time saver, in getting patients to voice their concerns.