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The rural perspective on HIV/AIDS|
By Celena E. Kusch
Dr. Deborah B. Preston, associate professor of nursing, knows about the challenges of rural access to health care. Preston and her Penn State colleagues have already conducted studies of health care in the Appalachian region of rural New York and Pennsylvania. She and Dr. Anthony DAugelli, professor of human development and family studies, were recently awarded one of the first grants from the National Institutes of Mental Health to support an exclusively rural research program.|
According to Preston, the problems of coping with HIV/AIDS in rural communities are particularly acute.
Rural HIV issues are very different from urban areas, and they have been neglected, she explained. Policy and programs are designed in urban areas to fit urban needs, and those of us in rural areas have to adapt to focus on rural consumers of AIDS care and prevention. There is a need for coming together of rural practitioners, educators, consumers and researchers to dialogue and network to confront some of the rural issues that are unlike the issues we know from other communities.
To address this need, Penn States School of Nursing and the College of Health and Human Development sponsored a national conference on HIV/AIDS in Rural Communities: Meeting the Challenge. Preston served as faculty chair. During the three-day conference, speakers addressed the needs of health care and social service professionals involved in planning and providing direct delivery of services to persons living with HIV/AIDS in rural settings, like central Pennsylvania.
Never before have we had a conference like this, commented Preston. In rural areas where everyone has to be a jack-of-all-trades, it is really important that we all talk to each other. We tried to develop a conference that looks like a small town so that we can connect with each other and gain insight into what each of us is doing to improve the quality of care for rural persons with HIV/AIDS.
The more than 120 conference participants represented colleges and universities, rural and national AIDS programs, hospitals and health care providers, corrections facilities, drug and alcohol abuse and other community health services from more than 20 U.S. states and Canada. A community presentation, reception and photography exhibit of women with HIV/AIDS also drew about 100 attendees for an evening program.
Dr. Richard Sowell, professor and chair of the Department of Administrative and Clinical Nursing at the University of South Carolina, delivered the community address. He advocated for serious changes in the way we think of AIDS prevention and treatment.
The way we define AIDS determines our response to the problem, and we need to define it as a human rights issue, he said.
HIV/AIDS preys upon the vulnerable those who lack resources, education and choice, Sowell continued. We need to look for community solutions to eliminate the stigma and discrimination that is actually promoting the continued spread of the disease worldwide. Prevention of transmission must be supported and enabled by helping people be open to testing and revealing the need for protection during sex and drug use to avoid further transmission.
Communities need medicine, and they also need help setting up the infrastructure to fight the disease and the social climate and community strength to prevent it, he said.
Responding to Sowells presentation, one participant agreed the most difficult barrier to prevention of HIV/AIDS is the basic human experience and the need to make a connection and be needed and belong. That need can lead people to drugs and sex and other issues, and that is the biggest difficulty to overcome if you have to keep telling people just to abstain from risky behaviors, she said.
Plenary speaker Dr. Barbara Aranda-Naranjo, branch chief of Special Projects of National Significance, HIV/AIDS Bureau, U.S. Department of Health and Human Services, provided a dramatic illustration of the risk of programs that do not focus on community AIDS prevention. She discussed findings from her research in South Texas agricultural worker communities.
These are the people who pick the vegetables and fruits we need to have a healthy diet, she noted, but they are completely lacking the resources, education and access to deal with HIV and AIDS.
In conducting her study, Naranjos research team integrated their work with a number of existing rural agencies to gain access to the communities. Local lay health workers and peer educators called promotoras conducted the interviews and participated in all parts of the study. The research found that nearly 95 percent of those surveyed agreed to HIV testing if the tests were offered and administered in the home. The study revealed that HIV prevalence is low, but that poor health care and low levels of awareness pose a serious risk to future disease spread.
These migrant families feel their work is contributing to the health of this country. They know that HIV/AIDS has come to them, but in many ways, its just one more thing they have to face. Being isolated and in poverty, these communities have all the risk factors for HIV/AIDS and a lot of misinformation about the disease. AIDS would flourish if it came into the area, she said.
Dr. Linda Frank, principal investigator and director of the Pennsylvania AIDS-ETC and winner of the 2001 Shirley Novosel Outstanding Alumni Award, addressed the role of nurses in overcoming these barriers in rural areas, noting, We need to publish more about what we know works, to collaborate with other disciplines and to maintain visibility in policymaking, locally, regionally and nationally. Nurses have the skills and are in the right place to manage the treatment of this disease in holistic ways tailored to the region and the environment of our complex rural communities.
Frank, Preston and Sowell all served on the HIV/AIDS in Rural Communities conference planning committee, which also included Dr. Rebecca M. Beatty, coordinator of continuing and distance education for the Penn State School of Nursing, and Dr. Sarah H. Gueldner, professor of nursing and director of the Penn State School of Nursing.
The conference was co-sponsored by the Pennsylvania Mid-Atlantic AIDS Education and Training Center and the Pennsylvania AIDS Coalition, with contributions from the Area Health Education Consortium, Merck Pharmaceutical, DuPont Pharmaceuticals, GlaxoSmithKline, Agouron Pharmaceuticals, and Dr. Fred Vondracek, associate dean for outreach and Cooperative Extension in the College of Health and Human Development.