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HIV/AIDS |
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Care and Support for HIV/AIDS: Building Capacity |
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The number of people and families living with HIV/AIDS who need care and support services is continuously increasing. This poses tremendous challenges to the health care and community systems that are coping with and responding to the pandemic. HIV/AIDS patients already occupy a large proportion–often more than half–of the hospital beds in heavily affected countries. Given the chronic but clinically manageable nature of HIV and the number of new infections–rising to 16,000 per day–demand for care and support at institutional, community, and family levels will only increase in the foreseeable future. At the same time, provision of appropriate care at all levels is hampered by the lack of human, technical, and financial resources; continuing high levels of stigma; and the fact that most people living with HIV/AIDS (PLHA) today do not know they are infected. Lessons Learned Comprehensive needs of people and families living with HIV/AIDS: The needs of PLHA and their families can be categorized in four interrelated domains: medical needs, such as treatment information and treatment; psychological needs, such as emotional support; socioeconomic needs, such as welfare provisions, help in the household, and orphan support; and human rights and legal needs, including access to care and protection against violence and discrimination. Over the years, relevant responses have been developed in these domains, resulting in comprehensive care and support services. When they are built on existing structures, such services have proven effective, efficient, and sustainable if the various providers link and complement each other's activities. Continuum of care: When people infected with HIV progress into recurrent illnesses, the types of services they need will change. It is this provision of comprehensive care across a continuum–from home and community to institutional services–that will ensure that the specific needs of clients and their families are met. Effective referral systems have been developed to ensure that people living with and affected by HIV can benefit from the variety of services at the community and institutional levels throughout the course of infection and disease. Medical and nursing care: PLWHA need medical services and nursing care that will reduce HIV morbidity and mortality and optimize their quality of life. Such services include appropriate diagnosis; treatment and prevention of tuberculosis (TB) and other opportunistic infections and HIV-related illnesses; provision and management of highly active antiretroviral therapy (HAART); palliative therapies; and possibly traditional and alternative remedies. Although the capacity of health care systems and the human and financial resources available will determine the choice of interventions and the quality level of medical care among and within countries, minimal standards can be put in place and monitored. Psychological support: HIV/AIDS is often associated with a range of psychological sequelae that must be addressed throughout all stages of HIV infection. Psychological support is critical for helping individuals, couples, and families affected by HIV to cope with their fears and emotions. HIV voluntary counseling and testing (VCT) provides the bulk of initial psychological support. It also links individuals, couples, and families to follow-up psychological support and other support services, such as legal, welfare, and spiritual support within communities, peer support groups, appropriate medical care services for early management of TB and other opportunistic infections, and interventions to reduce mother-to-child transmission (MTCT) of HIV. In addition, VCT has proven to be an important factor in promoting safer sexual behavior, thus preventing HIV transmission, and enabling PLHA to disclose to and involve significant others. Where VCT has become a regular service integrated into health and community systems, it has helped to normalize HIV/AIDS and decrease the stigma attached to the disease. Socioeconomic support: PLHA and their families are confronted with additional challenges throughout the course of infection and recurrent episodes of illness. These include isolation, loss of income, medical and transport expenses, funeral costs, and the unmet needs of orphaned children for education, shelter, nutrition, clothing, and other necessities. With some external support and the involvement of PLHA, families, community leaders, volunteers, government agencies, nongovernmental and religious organizations and other community groups, existing social networks can care for ill family members and adequately support children and spouses within the home environment. Home care programs are cost-effective and can be sustained when there is strong community support for and involvement in running them, reinforced by quality medical and social services from nearby facilities. Major challenges remain in scaling up, income generation, and meeting nutritional needs of the rapidly increasing number of affected families and orphans. Care for the carers: Caring for anyone with a serious chronic illness is a physical and emotional challenge for even the most dedicated caregivers. This is particularly true for nurses, counselors, volunteers, and caregivers in the home who provide the bulk of care for PLHA. These caregivers also need support to help them do their jobs well, avoid burnout, and keep themselves free of infection. Regular social events, better recognition, incentives, peer support, access to post-exposure prophylaxis, and additional training or meeting opportunities are some of the ways to address the need of caregivers for support. Prevention and care complementarity. Experience and research in implementing community-based prevention and care programs has shown that a synergistic approach promotes community acceptance of HIV, reduces stigma, and encourages PLHA to practice preventive behaviors and seek relevant care and support. HIV VCT is an important entry point for both prevention and care as well as in reducing stigma. The involvement of PLHA in the design and implementation of prevention, care, and support programs has been shown to be instrumental to the quality and sustainability of such programs. Workplace education by a PLHA employee, discordant couple counseling, VCT targeting youth, and post-test clubs linked to care services are examples of such complementarity. Resources
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