By Katie Elyce Jones
It’s not hard to find a quiet place to live out your life in the South. Stretches of farmland and tree-blotted mountains offer plenty of peace and isolation. But sometimes a side effect of seclusion is silence, and it may shock many to learn that 45 percent of the country’s new AIDS diagnoses occur in the South.
“This area has a lot of responsibility for the people who are newly diagnosed. It also accounts for the majority of deaths by HIV,” says Sadie Hutson, associate professor in UT’s College of Nursing.
That’s why Hutson and research colleagues at UT and the University of Alabama are studying how patients living with HIV/AIDS in one of the poorest, most rural areas of the South—Appalachian Tennessee and Alabama—are preparing for the end of their lives.
Due to decades of research and advancements in HIV therapeutic care, death by HIV is often no longer a direct result of the disease itself. Because the virus compromises the immune system, many patients die from heart disease, cancer, and other chronic illnesses before HIV develops into AIDS.
Hutson, who has dedicated much of her research career to oncology, was familiar with the end-of-life needs of cancer patients and the general population. So when the National Institutes of Heath issued a call for proposals focused on end-of-life care for HIV/AIDS patients in urban areas, her team took a risk and instead submitted a proposal to investigate the isolated hills of East Tennessee and Northern Alabama.
“I thought, if they’re calling on people to do this research in large urban areas, we certainly don’t know what this looks like in rural areas,” Hutson says. The gamble paid off with a grant for more than $420,000 from the National Institute of Nursing Research.
Work began with a pilot study in 2013. Researchers interviewed nine patients in the region living with HIV/AIDS at all stages of the disease. These preliminary efforts helped establish the strategy for conducting the forty interviews and 300 surveys planned for the main study.
“We’re recruiting patients at all stages of illness with the rationale that you shouldn’t wait until death is imminent to be planning for end-of-life care,” Hutson says. “The idea is to get people to plan early and outline their wishes—having a good death is part of having a good life.”
Interviews with twenty Tennessee and twenty Alabama patients will gather qualitative information about their physical, psychological, and legal needs, including their logistical access to health care; their spiritual, religious, and ethical beliefs; and how they perceive their diagnosis is received in Appalachian culture.
Based on the pilot study interviews, Hutson believes the stigma associated with HIV/AIDS, as well as the unique cultural roles of religion and family in rural Appalachia, influences how patients seek and respond to available health care services.
“I would contend that one of the reasons we have higher mortality [from AIDS] in the South is due to stigma,” Hutson says. “There is a real fear to get tested. I had one patient who said they’d rather be known as a ‘meth head’ than a patient with HIV.” Once infected, some people even refrain from telling their own families about the diagnosis.
For patients seeking care, options may be limited based on what services they can afford. “Appalachia is full of the working poor—people who have two or three jobs and make too much money to qualify for TennCare, but can’t afford to pay out of pocket,” Hutson says.
While patients living in urban areas may also face the stresses of stigma and poverty, they are not often asked to travel long distances over mountainous terrain or down country roads to receive affordable health care services.
According to a recent Appalachian Regional Commission report, 176 out of 420 counties in Appalachia ranked below the fortieth percentile in health care cost, coverage, and access.
To quantify what they learn from patient interviews, the research team will adapt an existing end-of-life care survey known as the Lyon Advanced Care Planning Survey to the unique concerns of HIV/AIDS patients in Appalachia. It will measure patient preferences and service needs.
The data will then be integrated into a Geographic Information Systems approach to compare the availability of and access to services. “The maps will demonstrate disparities in quantity as well as access,” Hutson says. “For instance, it will depict travel time from where people live to care facilities.”
The researchers expect the study to inform health care providers and policymakers where critical resources are needed. They also hope it will encourage patients to think about their future care needs. Further, the findings will provide valuable information to health care providers who will be critical in initiating end-of-life planning earlier in the patient care continuum. It’s a long road, and everyone needs to be prepared for what lies ahead.