sons. 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