CARE Act Title II Manual - 2003 Version
Although most HIV/AIDS cases continue to be in cities, more cases are being seen in rural areas. This requires service delivery systems to meet such unique needs as transportation to bring clients to services across large geographic areas and training to increase the number of HIV/AIDS providers. Multiple obstacles may hinder the development of HIV/AIDS care programs, however. Inattention to HIV/AIDS may be caused by underreporting of cases (e.g., PLWH from urban areas who return to their rural homes). Some PLWH may fear of breach of confidentiality and seek services outside their area. In some areas, transient populations (e.g., migrant farm workers, illegal immigrants) complicate care delivery.
The small number of reported cases of HIV/AIDS in rural areas can perpetuate the denial of many community leaders and health professionals that HIV/AIDS is a significant concern. Since funding is often based on the number of reported cases in an area, inaccurate reporting can hinder efforts in rural areas to secure funding for HIV/AIDS care.
No single model of service delivery can accommodate the unique needs of every rural area, in part because of their diversity in terms of population density, geographic size, and pool of providers. For example, the number of persons per square mile ranged from a low of 8.1 to a high of 148.3 in one study of rural HIV/AIDS services, conducted by HRSAs Office of Science and Epidemiology (OSE). The rural environment in remote and often frontier areas like those in the Western U.S. produce major geographic and climatic barriers to organizing health services, including HIV/AIDS care. These areas have small numbers of persons living with HIV disease (PLWH), dispersed over large geographic areas, which deters the development of cost effective health and social support services. PLWH may have to travel to urban areas for access to appropriate care.
Strategies for Improving HIV/AIDS Care in Rural Areas TOP
Denial that HIV/AIDS is a problem and a lack of skilled, knowledgeable HIV/AIDS providers are two of the major barriers to HIV/AIDS care in rural areas. Below is a discussion of confronting these barriers through education and provider participation.
Lack of education about HIV/AIDS in the community level results in a lack of community support for HIV disease programs, which can make local officials reluctant to support programs or implement positive public policy. Educational efforts should focus on allaying fears and answering questions about HIV disease, and should reframe issues in a way that will result in positive local responses. Educational programs should provide information on the following topics:
In addition, educational programs should challenge people to confront their fears and negative attitudes about PLWH and their families.
Education is also an important component in the care of those already infected. PLWH education efforts should include information on preventing the infection of others and preventing reinfection. Prevention efforts are particularly important when dealing with the dually diagnosed, whose use of drugs and alcohol may hinder the adoption of safer sex practices.
Health care professionals who are willing to provide care to PLWH remain in short supply in rural areas. Common reasons cited by providers are lack of knowledge about the disease, limited access to specialists for consultation and referral, fear of being identified as an AIDS provider, inadequate reimbursement, and burnout. The limited number of rural primary care physicians with experience treating HIV disease represents a major void in the continuum of care for PLWH in these areas.
Strategies to overcome both provider skill gaps and provider reluctance to participate in the HIV/AIDS continuum of care must be tailored to the specific local reasons for shortages of care providers. A critical first step is to understand why a provider has not participated in the past. Some problems, such as a lack of providers with experience treating HIV disease, will not be solved in the short term. However, creative approaches including the following can help to increase provider participation:
Models for Rural Service Delivery
The Vermont Model
Vermont expanded access to HIV/AIDS care by creating centers throughout the State. Their original setup was a single HIV/AIDS clinic, located at the University of Vermont, which clients from throughout the State had to travel to in order to receive state-of-the art care and to protect their confidentiality. This created such problems as long distance travel (up to three hours each way) and primary health care providers who were not included in their clients care plans. Also, centralized services encouraged a lack of awareness in small communities regarding the growing HIV/AIDS epidemic. When asked, the majority of PLWH wanted to receive care in their own communities while being assured that their confidentiality was being protected.
Regional comprehensive care clinics were established in rural Vermont in 1994, each staffed by a part-time, HIV-trained nurse practitioner and a part-time social worker. A physician travels to each of the clinics once a month and is in contact with them weekly. Each clinic is housed in a regional hospital to help maintain patient anonymity and confidentiality. The clinics are also used as a platform for teaching local providers about the care of PLWH. A database also has been established to help in data collection and evaluation of the program.
Mountain Census Division Model
Several factors deterred the development of a cost-effective HIV health and social support services system for PLWH in the Mountain Census Division. These include distance, cold weather, underdeveloped transportation systems, and a demographic pattern of small numbers of infected individuals dispersed over a large geographic area.
The following approaches were developed to reduce costs while maintaining effectiveness in HIV service delivery:
Significant strides have been made to improve the delivery of services in rural areas and communities. However, rural States report that the following gaps remain:
Further, service delivery in rural areas has also been hindered by the shifting demographics of HIV disease. The demographics now require a rethinking of service delivery models to make services more culturally appropriate and sensitive. For example, homeless persons and people of color may require tailored efforts to link individuals with care and treatment. Coordinated, comprehensive service provision is required to help meet both the basic needs and HIV care needs of lower-income PLWH.
Piedmont HIV Health Care Consortium. Community Profile Summary Report: Understanding the Needs of Persons with HIV Disease. Durham, N.C.
An Evaluation of HIV/AIDS Service Delivery in 15 Northern California Rural Counties, a project of the United Way of Butte and Glenn Counties, funded by the Sierra Health Foundation.
Grace, Christopher, Richards, K. Going the Distance: Overcoming Service Delivery Challenges in Rural Vermont, Innovations: Issues in HIV Service Delivery, Spring 1997.
Rounds, K. Responding to AIDS: Rural Community Strategies. Social Casework: The Journal of Contemporary Social Work, 1988.
Health Resources and Services Administration, HIV/AIDS Bureau, Office of Science and Epidemiology. Rural HIV Service Networks: Patterns of Care and Policy Issues. Rockville, MD: U.S. Department of Health and Human Services, 1995.