RURAL CHALLENGES to CARE DELIVERY
Whether in the Nation’s largest city or smallest community, providers of HIV/AIDS care have much in common. They know that comprehensive care is critical and are committed to providing essential support services that make engagement and retention in care possible. They value cultural competency and confidentiality, and they are committed to quality and to working with other organizations to create a holistic approach to the needs of clients.
Although providers everywhere may share a strategic vision, living in a rural area can create unique challenges to addressing HIV/AIDS. Perhaps none of those issues is more significant than stigma.
Stigma
“If you haven’t lived in this area, it’s difficult to fathom the fear people have of others finding out they have this disease,” says Sister Betty Ann McDermott of Sacred Heart Southern Missions AIDS Ministry in Walls, Mississippi.
The ministry serves PLWHA and their families in nine northern Mississippi counties. Four of the counties fall within the Ryan White HIV/AIDS Program Part A Memphis Transitional Grant Area (TGA).
Last year, Sacred Heart reached 130 people living with or affected by HIV/AIDS by offering such services as rental and utility assistance, a thrift store, HIV education, advocacy, food pantry, pastoral counseling, and transportation as well as referrals to and linkages with providers of other services. Sacred Heart’s AIDS Ministry services are funded through a mixture of Ryan White Part A and non–Ryan White monies. Where Sacred Heart serves, the issue of stigma is so pervasive that it is a constant concern. According to Sister Betty Ann:
I have seen deathbed confessions to a spouse or partner who then has to deal with the loss that comes with death and also the new knowledge that the loss is due to AIDS. It also brings the simultaneous realization that they, too, may be infected with HIV. It adds to the psychosocial complexity of providing needed information, care, and comfort. It makes denial seem like a more appealing option.
Sacred Heart Southern Missions can mitigate some of the impact of stigma for its clients. First—and perhaps most important—Sister Betty Ann explains, the organization is not “branded with HIV disease” because it offers a broad range of services, of which the AIDS Ministry is only one part. “People know we’re associated with Sacred Heart but not the AIDS Ministry, so [they] don’t suspect it if we come to someone’s house to talk to them or pick them up,” she says.
Similarly, the AIDS Ministry’s office is located within the social services and volunteer office, and all personnel are identified as part of Sacred Heart Southern Missions, not the AIDS Ministry. This simple practice gives people the sense of privacy and anonymity they so deeply value. In addition, Sister Betty Ann provides client and community education about HIV to help diminish stigma associated with the virus and to encourage people to enter care.
Sacred Heart serves the southern edge of the Memphis TGA. Across the Mississippi River, in the TGA’s westernmost area, is Crittenden County, Arkansas, home to the federally funded East Arkansas Family Health Center, a Ryan White Part C grantee. Like all Community Health Centers under the Federal 330 program, the center provides an array of primary health care services. Thus, PLWHA who seek care are not assumed to have AIDS simply because of their association with the facility.
“We work hard on confidentiality, and to be safe, we talk to clients in private rooms. All file cabinets are locked, and because we’re under the umbrella of a large health center, it helps make patients feel safe,” explains Cherry Whitehead-Thompson, HIV/AIDS program manager at East Arkansas Family Health.
Many organizations serving PLWHA in rural areas take additional steps to help people cope with stigma. Staff participation in cultural sensitivity training can create a better understanding of consumer perspectives. It also can provide practical, hands-on approaches to help consumers deal with the impact of stigma.
Over the years, the National Minority AIDS Council has offered a variety of successful training through a technical assistance cooperative agreement with the HIV/AIDS Bureau. Since inception, the program has addressed barriers to accessing HIV/AIDS care related to stigma. But training shouldn’t stop with staff. Nancy Young, program director at Special Health Resources for Texas (SHRT) in Longview, Texas, notes that “all clients undergo patient education to help reduce and overcome stigma as well as increase understanding of its effects.”
Over the past decade, technology has become a powerful force in the delivery of health care in rural areas. Telemedicine is now a familiar practice, and in 2005, the Health Resources and Services Administration (HRSA) administered 159 telemedicine projects, of which 92 totaled more than $34.5 million each.
Internet and e-mail technology can also be used to help meet consumers’ other needs. For example, in addition to providing rural PLWHA with a host of information about living with HIV/AIDS successfully, the virtual world can help ease the isolation that is so often a result of stigma. Unfortunately, many underserved and impoverished PLWHA lack computer literacy as well as computer access. For those who have access, however, services such as bulletin boards and chat rooms can help replace isolation and loneliness with community and support.
