Summary of track D: social science: research, policy and action.

SCOPE: This review summarizes the main issues discussed during Track D, which examined the societal impact of HIV/AIDS, and responses to the epidemic by individuals, families, communities and societies worldwide. Micro- and macrolevel issues addressed included the development, implementation and evaluation of programmes for prevention and care; policy development and implementation; structural issues such as the impact of gender relations, development and migration on the development of the epidemic; and the social and economic impact of HIV/AIDS on affected societies and communities. RECURRENT THEMES: Presentations provided strong evidence that peer-led, community-based programmes offer particularly effective ways of working, and that participatory research involving affected communities provides useful results for the design and evaluation of programmes and policies. This is the case across settings, issues, populations and countries. FUTURE DIRECTIONS: Emerging needs include how best to ensure sustainability of national and international responses, how best to scale up successful interventions for wider reach, and how best to work with systematically marginalized, neglected groups and populations. Research priorities include the characterization of the multiple determinants of HIV-related vulnerability, and the evaluation of interventions that take these complex determinants as their starting point. A more coherent and strategic response requires less separation between the different constituencies involved in AIDS work, and the more sustained involvement of people living with HIV/AIDS themselves.

Tuberculosis care in community care organizations in sub-Saharan Africa: practice and potential.

SETTING: Community care organizations in sub-Saharan Africa. OBJECTIVES: To evaluate current tuberculosis (TB) care in community health care organizations in sub-Saharan Africa, to assess their potential contribution to tuberculosis care, and to develop a model for expanded community participation in effective TB control. DESIGN: Quantitative assessment of tuberculosis care and cross-sectional assessment of qualitative measures in 14 community care organizations in Uganda, Zambia, South Africa and Malawi. RESULTS: The community care organizations assessed mainly provided care for human immunodeficiency virus (HIV) and aquired immune deficiency syndrome (AIDS) patients, and received funding from non-governmental organizations. Shortcomings in tuberculosis care included delays in diagnosis (which was often not based on sputum examination), drug shortages, low completion rates, high default rates, inadequate recording, little interaction with government tuberculosis programmes, and inadequate training of staff. However, one organization that provided primarily tuberculosis care and collaborated closely with the district tuberculosis programme and hospital attained a high treatment completion rate. The strong points of the community care organizations that favour a potential role of community participation in tuberculosis care were accessibility and staff motivation. CONCLUSION: Despite most community care organizations' shortcomings in tuberculosis care, they do have the potential to improve the care of tuberculosis patients, thus reducing the load on overstretched health facilities. Their potential impact on tuberculosis control depends on their population coverage and sustainability. HIV/AIDS community care organizations with strengthened management of tuberculosis care could serve as a model for expanded community participation in tuberculosis control. Operational research is needed to assess the feasibility and cost-effectiveness of community-based TB care.

"I want to work" -- Kika's story. Special report: women and HIV.

PIP: Kika, a 35-year-old Ugandan mother of five was widowed by AIDS in 1990. After her husband's death, she lost her job and was forced to return to her late father's land and to give some of her children to her mother's care. Soon after she returned, her three-year-old daughter began showing symptoms of HIV infection. In total despair, Kika contacted TASO (The AIDS Support Organization) for help. TASO counselors have helped Kika identify possible income-generating projects which she is trying desperately to realize. This is very difficult because she has no capital to invest in her scheme. Her neighbors and sisters know her status and treat her kindly. Her mother probably suspects that Kira has AIDS but will never discuss it with her. Kika has been celibate since her husband died because she does not want to transmit the disease to another man or to another potential child. Her concern is entirely vested in producing enough income to take care of her children until she dies.^ieng

AIDS and community-based care in Uganda: the AIDS support organization, TASO.

TASO is an organization set up by Ugandans who are personally, in one way or another, concerned about AIDS. Its work in Uganda is an attempt to bridge the gap between the African approach to disease and the western, hospital-based, approach. The result is a service providing community-based care to those affected by AIDS and HIV. The attitudes of the rural people of Uganda to disease, as a typical example in the developing world, are discussed. Our conclusion is that a community-based approach is ideal in caring for those affected by AIDS and HIV in Africa.

AIDS care in the family.

PIP: The number of people falling ill as a result of HIV infection will rise dramatically in coming years, regardless of existing prevention efforts. Since AIDS is a chronic disease lasting months or years, the home is increasingly the option of choice for care for both sick individuals and health care systems. If the majority of people living with AIDS are to receive care within the family, a comprehensive range of medical, nursing, and counselling services must exist from hospital to home. The best care depends on a continuity of services, with referrals to help the sick receive comprehensive services as close to the home as possible. When care moves out of health care facilities into the family, community dynamics enter the picture. People living with AIDS, and sometimes the families caring for them, may be rejected. Without support, communities and families may abandon their traditional caring roles, and AIDS patients may be left homeless. The booklet of the World Health Organization's Global Programme on AIDS (GPA) entitled Living with AIDS in the community aims to help individuals, families, and communities to live positively with AIDS. In considering family care, the effect of HIV/AIDS on households is immense. Spending on care for AIDS patients may reduce the amount available for the health care of other family members. Communities should develop supportive networks composed of neighbors, religious groups and clubs in order to avoid the full burden falling on female members of the family. Care provided by family, friends or neighbors is not devoid of problems. Many may be worried about their lack of knowledge or about giving emotional support to someone who is terminally ill. They may also fear catching AIDS themselves. GPA recently published an AIDS Home Care Handbook to help health care workers teach and guide families.^ieng

Participatory evaluation of counselling, medical and social services of The AIDS Support Organization (TASO) in Uganda.

The AIDS Support Organization (TASO) is an indigenous non-governmental organization (NGO) of HIV-infected and affected people in Uganda. TASO provides counselling, social support, medical and nursing care for opportunistic infections at 7 centres affiliated to district hospitals in Uganda. Between 1993 and 1994, the services provided by TASO were evaluated through a participatory approach between staff and clients. TASO counselling services helped clients and their families to cope with HIV and AIDS, with 90.4% of clients revealing their serostatus, and 57.2% reporting consistent use of condoms in the past 3 months. TASO was also the main source of medical care for clients with opportunistic infections in the last 6 months (63.8%). As a result of counselling, over half of the clients (56.9%) made plans for the future and 51.3% wished to make wills. There was a high level of acceptance of people living with HIV/AIDS (PWAs) by families (79%) and the community (76%). Care was provided to PWAs at home mainly by women (86.2%). TASO has demonstrated that individuals and their families are able to live positively with HIV/AIDS. Through counselling, medical care and material support to clients and their families, TASO has effected change in people's attitudes, knowledge and lifestyles. In particular, TASO has demonstrated a strong capacity to overcome four problems that haunt AIDS care in most places: (1) revealing one's HIV-serostatus to relevant others; (2) accepting PWAs in family and community; (3) seeking early treatment; and (4) combining prevention and care. In general, TASO has shown that specialized services to meet AIDS care needs can be added to existing health services at district levels. As a result of the participatory evaluation, a well-accepted monitoring system was established.

PIP: The AIDS Support Organization (TASO) is an indigenous nongovernmental organization of HIV-infected and affected people in Uganda. The organization provides counseling, social support, and medical and nursing care for opportunistic infections at seven centers affiliated with district hospitals in Uganda. TASO's services were evaluated during 1993-94 via a participatory approach involving staff and clients. The organization's counseling services helped clients and their families to cope with HIV and AIDS, with 90.4% of clients revealing their serostatus, and 57.2% reporting the consistent use of condoms during the preceding 3 months. TASO was the main source of medical care for clients with opportunistic infections during the preceding 6 months. As a result of counseling, 56.9% of clients made plans for the future and 51.3% wished to make wills. The evaluation further found a high level of acceptance of people with HIV/AIDS (PWA) by families (79%) and the community (76%). Women provided 86.2% of in-home care to PWA. TASO's experience demonstrates that individuals and their families can live positively with HIV/AIDS and that specialized AIDS care services can be readily added to existing health services at the district level.