Reducing Isolation Appears Beneficial to HIV-Positive Patients
DURHAM, N.C. -- Addressing the physical and spiritual isolation of HIV-positive patients in underserved areas of rural North Carolina can reduce the numbers of medical crises, improve clinic attendance rates and help re-establish religious affiliations, according to the preliminary results of a Duke University Medical Center pilot study.
Importantly, the Duke researchers say, these benefits were achieved more by the coordination of existing community resources and services than by the expenditure of additional resources. They add that their experience could serve as a model for supportive care of rural AIDS patients.
"In rural areas, HIV-positive patients and their families often feel a sense of isolation – both physically and emotionally," said Dagney Jochem, Duke clinical chaplain who co-led the study with Patricia Bartlett, a clinical social worker. "When patients feel more connected to their community, have a better understanding of their disease, and maybe return to religious life, they seem to do better."
The sense of isolation, both physical and spiritual, is especially acute in rural areas, Jochem said. Lack of transportation makes it difficult for patients to get to doctors' appointments, pick up medications, or attend to the normal activities of everyday life.
"Just as importantly, there is a spiritual isolation that can only occur in rural settings," she said. "When pastors and churchgoers find out that they won't get AIDS at the Friday night supper, for example, it makes it easier for patients to be readily accepted into religious life. For many people, it is very important to hear the message that God loves them."
"In areas where everyone knows everyone, patients can feel too ashamed to talk about their disease," she continued. "With the misconceptions often found in small towns about AIDS, many patients don't feel comfortable about talking openly about their disease."
Jochem prepared the results of the Duke study for presentation Wednesday at the 12th World AIDS Conference in Geneva. She reported on the first year of results from a three-year project, Partners in Caring (PIC), which is jointly funded by the hospitals division and the rural church division of The Duke Endowment.
The study was conducted in a rural region of north-central North Carolina comprised of Vance, Warren, Franklin, Granville and Person counties. The 59 patients who participated in the study tended to be minorities, of low socio-economic status, and female.
In her role as PIC coordinator, Jochem visited patients and families in their homes to help assess the particular needs of each. She worked in conjunction with existing case managers for each patient and served as a link to social, medical and religious services already available in the community.
She also visited many churches and provided seminars that educated more than 40 pastors about AIDS in an attempt to dispel misconceptions about the disease.
"There is still widespread fear that AIDS can be caught the same as the common cold, and because of this misconception, many of our patients have had horrible experiences in their churches," Jochem said.
Surprisingly, she also found that health care workers in the area also harbored misinformation about HIV – some were reluctant to treat these patients or were uninformed in the latest of drug combination therapies, she said.
"In many ways, my function was to bring many different kinds of people together," Jochem said. "There are a lot of resources out there -- people just need to know how to find them."
After the first year of the PIC program, Jochem reported averting three medical crises in the home, a 75 percent attendance rate for patients at clinic, 82 patients and family members who reported reduced isolation and 33 patients who re-established religious affiliations.