Religion is important difference among HIV-infected Southern minority population
Adherence barriers largely are the same as the coasts
Since many medication adherence programs were developed with HIV-infected urban and coastal populations, it is legitimate to ask whether these strategies will work with a deep South minority population.
"I suspected the barriers to adherence in this Southern population might be different from what is in the literature because most of the studies have been in California, New York, and large cities," says Debbie Konkle-Parker, PhD, FNP, an assistant professor in the department of medicine and school of nursing at the University of Mississippi Medical Center in Jackson, MS.
"I was wondering of this population that is mostly African American and heterosexual has a different look than what you'd typically see with a white, gay male population in San Francisco," Konkle-Parker says.
"I wanted to find out what were the specific issues for our population, and then I'd use this information in designing an adherence intervention," she adds.
What Konkle-Parker found surprised her: "The barriers and facilitators for medication adherence were, for the most part, pretty similar to what was found elsewhere," she says.
"That was good to know because it implies that interventions that were tested in other parts of the country might work in this part of the country," Konkle-Parker adds.
However, there was one notable difference: "Prayer and spirituality was very helpful for our population," she says.
"They spoke about how important it was to have that faith, which was a foundation for them," Konkle-Parker says. "In a sense, they were depending on God to help them take their medications and help them deal with the difficulties they face because of having HIV."
Southern minority patients expressed that religion was an important part of their lives, she adds.
"That's important for us in the research and medical field to recognize because we need to make that a part of what we do to help people work through the difficulties of what they come up against with HIV," Konkle-Parker says.
The chief commonly-experienced barriers included the perceived burden of having to make extra planning, denial of HIV, and life stress.1
Denial frequently was a barrier
"They had a personal denial of the disease process, didn't want to acknowledge it and, therefore, didn't take their medicine," Konkle-Parker says. "And stress is cited in all the studies about adherence."
Other barriers included side effects from the medicine and social stigma and shame, she says.
"People have to keep it a secret from their jobs," Konkle-Parker says. "They're embarrassed to pick up their medications and embarrassed to admit they have this disease."
The study found some commonality among the factors that could assist patients with their medication adherence.
For instance, acceptance of the HIV diagnosis made it easier to take the medicine, Konkle-Parker says.
"They had to come to a point where they could say, 'Yes, nobody is going to take care of me except myself, and I know what I have to do about it,'" she explains. "People had to think about the consequences of not taking the medication and think about the people they knew who died from AIDS and think about not wanting to put their families through that kind of turmoil."
The recent improvements in antiretroviral medication regimens has helped to reduce side effects, easing that barrier, she notes.
"And support from their families and friends is the counterbalance to social stigma and shame," Konkle-Parker says.
As a result of the study's findings, Konkle-Parker has developed an intervention that is based on the information/motivation behavior skills model, tailored to each individual's needs.
"I began the intervention fairly soon after the focus groups, but I didn't fold faith into the intervention as much as I should have," she says. "I do plan to include spirituality in that more in the future."
The chief strategies she uses for adherence are as follows:
- First recognize and acknowledge to the patient that this is difficult, Konkle-Parker says.
- Ask the patient what are some of the things he or she feels will be the most difficult in terms of his or her acceptance of HIV, she says.
- Find out who the patient can talk to about his or her HIV infection and see if that person can support him or her down the road when extra help is needed.
A peer advocate or support group is needed to let patients know they're okay, Konkle-Parker says.
"Denial, stigma, and shame make it very difficult for people to take their medications regularly," Konkle-Parker says. "Even if there are housing and access to medication and side effects are okay, if you haven't accepted the fact that you have HIV, or if you need to keep it private from everybody in your life, then those more subjective things are going to make it difficult."
- Konkle-Parker DJ, et al. Barriers and facilitators to medication adherence in a Southern minority population with HIV disease. J Assoc Nurses AIDS Care. 2008;19:98-104.