Women and AIDS Care: Coping with "Triple Jeopardy"
A woman dies alone in a crowded rural hospital, abandoned by her husband and family because she is infected with HIV.
A mother waits to hear the results of a test that will tell her whether she has passed the AIDS virus to her newborn child.
A grandmother struggles to feed her five grandchildren, who have already lost their mother to AIDS, while caring for their bedridden father.
These women illustrate what the Society of Women Against AIDS in Africa calls the "triple jeopardy" of HIV/AIDS for women. As individuals, they are at risk of infection because of a host of biological, social and economic factors that make women particularly vulnerable to HIV. As mothers, they can infect their children with the virus. And as society's traditional caregivers, they are expected to care for husbands, sons and other family members with AIDS while somehow finding a way to support their families.
Women's needs for care and support as people living with HIV/AIDS and as the main providers of care for those with HIV/AIDS already exceed the resources available from families, communities, nongovernmental organizations (NGOs) and governments. During the next five years, this gap could widen as more and more of the 15.5 million living people infected with HIV--including at least 6.5 million women--develop AIDS.
What Is Care?
Too often AIDS care is narrowly defined as expensive antiviral therapy with AZT and other drugs that are not available to most people in the developing world. The World Health Organization (WHO) proposes a much broader definition of care that includes clinical management of illnesses resulting from HIV infection, nursing care, counseling and social support. These services should be offered across a "continuum of care," from home and community to hospital, linked by strong referral networks.
Even in industrialized countries, some of the most effective interventions for prolonging and improving the quality of life for people with HIV are "low tech." In the United States, for example, AIDS program personnel say the most important services they provide for people living with HIV/AIDS are education, counseling, advocacy and social support, which can include everything from being a sympathetic listener to practical assistance with housing problems.
Support from relatives, friends or volunteer "buddies" can reduce stress, which may prolong life. Nutrition guidelines, assistance in quitting smoking, and guidance on how to avoid infections that will assault an already weakened immune system also can help people with HIV/AIDS live longer, healthier, more productive lives.
Following such guidance is difficult when a person is too sick to work and cannot afford the appropriate food or when safe water is not available. But even in the poorest settings, families and communities can help people with HIV maintain nutrition and hygiene. Prompt and appropriate treatment of the common illnesses that affect people with HIV/AIDS, such as diarrhea, tuberculosis and bacterial pneumonia, also may be feasible in such settings.
Given the limited funding available for HIV/AIDS, most donors concentrate on prevention rather than care. But many working in the field believe that the most effective prevention programs are integrated with care and support services. Such integration enables programs to reach people living with HIV/AIDS and help them avoid passing the infection on to others. It also involves HIV-positive people--who are often the best educators--in prevention and makes prevention efforts more credible.
"Care is a value in itself and also a vehicle for prevention both before and after infection," said Dr. E. Maxine Ankrah, senior advisor to AIDSCAP's Women's Initiative.
Giving and Receiving
In many developing countries, women are more likely to have some contact with the health care system than men because they visit clinics for antenatal, family planning and well-baby services, according to Dr. Sandra Anderson, a nurse-scientist in WHO's Health Care and Support Unit. But access to all kinds of health services--particularly HIV/AIDS care--is limited for women and men for many reasons, including a lack of trained staff and shortages of essential drugs at health centers.
The stigma associated with HIV/AIDS also limits access to care and affects the quality of the care available. People are reluctant to go to their nearest health post because they do not want their neighbors to know about their HIV status, and many health workers are afraid to tell people who do seek treatment that they are infected with HIV.
"You need staff who understand something about the diagnosis and treatment of HIV-related illnesses, but they also have to have openness, confidence and a positive attitude to talk about this disease," said Dr. Anderson.
The stigma against people with HIV/AIDS is "relentless," she added. "Even in countries that have been coping with this epidemic for nearly a decade, the stigma remains discouragingly high."
That stigma may make it particularly difficult for women to seek care, Anderson said, citing the example of a woman who brings her baby to a clinic and finds out they are both HIV-positive.
"That's when terrible difficulties in her life begin that make her wish she had never gone for health care," Dr. Anderson said. "The chances that she is going to be blamed for bringing this illness into the family are very high."
Even in their homes and communities, women with HIV/AIDS may have no one to care for them. Some women are sent back to their relatives to die or are abandoned by their families. Ugandan women with AIDS told researchers that when their husbands became sick, it was their duty to ignore their own suffering and care for the men.
Many studies have shown that women bear most of the responsibility for AIDS care. For example, in a recent pilot program at Kenya's Kenyatta National Hospital that identified a caregiver as part of an AIDS patient's discharge plan, only three of the 42 caregivers were men. Some men do provide care for women with HIV/AIDS, but it is usually considered "women's work."
Dr. Elizabeth Ngugi of the University of Nairobi attributes the inequity of the AIDS care burden to patients' preferences as well as to society's expectations. Women contribute to the problem because many automatically assume the role of caregiver in addition to their other responsibilities as mothers, wives and wage earners. Many have become the sole economic support for their families.
"Because of the woman's readiness to take on that role, then the tendency is to give her more and more, overburdening her with the activities," Dr. Ngugi said.
Caregivers' Needs
"First of all, women who are going to be caregivers need information," said Dr. Anderson. This information includes how to care for a person with HIV/AIDS, where to go for medical assistance and how to take simple precautions to protect themselves from becoming infected. It also involves reassurance to counteract their fear of what they think is a very contagious disease.
Caregivers also need to know that they can take care of someone with HIV/AIDS openly, without condemnation from neighbors and friends. "They need a climate of acceptance and even one of reward," Dr. Anderson said. "Exactly what they don't need is to be stigmatized because they are willing to be the caregivers."
Counseling and emotional support are important for AIDS caregivers, whose pain at the prospect of losing loved ones to AIDS may be mixed with fear, shame and anger. Many are HIV-positive themselves and worry about what will happen to their children when they die.
Some of these concerns can be addressed through social support, such as assistance in drawing up wills or help with school fees. Many NGOs offer training, support groups and respite care. Some also provide financial subsidies or help families start income-generating activities, such as raising chickens or growing flowers to sell in the market.
Cost and Responsibility
Home care has been touted as the most effective as well as the most economical way of caring for people with HIV/AIDS. It can improve the quality of care by giving people an opportunity to continue living in their communities and allowing them to die with dignity. However, many fear that home care is simply a way for governments to assign the cost of AIDS care to communities--particularly women.
"There's a very popular notion out there that you shift the responsibility from the public sector into the household," said Quarraisha Abdool Karim, South Africa's national AIDS program coordinator, who believes that this idea is misdirected.
Many families want to care for their sick relatives at home, but find themselves overwhelmed by the physical, financial and emotional demands it entails, Dr. Ngugi said. "They are really willing to share what they have, but there is a limit," she said.
One solution is to send mobile teams of health workers and counselors to people's homes to support caregivers. In Uganda, for example, Kitovu Hospital's mobile clinic program provides training, counseling, and sometimes food and medicine to people caring for AIDS patients in their homes.
Such programs have had to change because the growing number of people with HIV/AIDS makes it impossible for hospital staff to visit the homes of all who need support, according to Dr. Anderson. A more realistic model is now used by Kitovu, which sends a team of specialists to a local club or other central place in a town twice a month to give caregivers advice and assistance. In Zambia, Monze Hospital's outreach staff trains and monitors health workers and groups of volunteers who support AIDS caregivers in their homes.
"Countries and programs are looking at more sustainable programs that still can give some kind of support to those caregivers who are on the front line," Dr. Anderson added. "They are mobilizing the people who are right there at the grassroots--the neighbors, members of religious organizations, the youth group."
Government health services and nongovernmental organizations are beginning to train village health workers in the skills they need to help people cope with AIDS. The AIDS Service Organization (TASO) in Uganda, for example, has extended its services for people living with HIV/AIDS and their families through the TASO Community Initiative. Under this program, TASO trainers help community leaders form a village AIDS committee and identify community needs and objectives. Community AIDS workers chosen by local leaders and trained by TASO conduct formal and informal educational sessions with groups and individuals, visit homes to provide counseling and assistance with care, distribute condoms and refer people for HIV testing and medical treatment.
In India's Manipur State, 25 NGOs, the Health Department and the Regional Institute of Medical Sciences are collaborating on a project designed to provide comprehensive care to people living with HIV/AIDS. Funded by WHO and OXFAM, the Continuum of Care Project is training hospital, health center and NGO staff in AIDS care and support and is creating referral networks among participating institutions to ensure medical and counseling support for home- and community-based caregivers.
As with home care, community-based programs should be seen as a way to extend and improve care, not as a substitute for public health and social services. "We must be careful that the endeavors of voluntary support systems do not allow the inadequacy of public services to go unnoticed," Dr. Ankrah said.
Government's role, according to Abdool Karim, is "to make resources available to support and facilitate community responses." These resources include a strong primary health care system for referrals, training and supervision of community health workers, and funding for community groups and other NGOs.
Partnerships
As the number of AIDS cases and deaths rises, the challenge is finding a balance between quality of care and coverage. Dr. Anderson notes that governments can provide services to more people but the quality of care is often poor, while NGOs tend to offer high-quality care but low coverage.
"What you really want to try to do is to find a minimum level of quality with the most coverage possible," she said. "We need to know how to provide the best to the most with the least resources."
Many programs have had to scale down their programs in order to sustain assistance. For example, instead of trying to pay the school fees for a limited number of orphans to go all the way through school, Nsambya Hospital in Kampala, Uganda, now serves more orphans by ensuring that they get basic literacy and mathematical skills and some vocational training.
Another way to keep pace with the growing demand for AIDS care and support is to adopt a more multisectoral approach to providing the mix of services required, with each sector responding to the needs it is best equipped to meet. Governments can strengthen primary health care systems and create referral links with other public programs such as social services, agricultural extension and education. Businesses can give employees time off to care for the sick, and NGOs can provide social support and income-generating opportunities. All of these groups should work closely with people living with HIV/AIDS to fight the stigma associated with the virus.
This approach takes careful coordination and a willingness to work together. "AIDS forces us to be good partners with many people," Dr. Anderson said. "It requires all the different areas and sectors to come together and contribute."
