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 we