The evolution of HIV/AIDS care has resulted in a wide range of care-givers, who work out of public and private hospital facilities, NGOs and community-based facilities. Others are volunteers and community health and social workers based at facilities or community sites. Many care-givers are family members or part of a client's close social network. Additionally, PHAs themselves engage in self-care and provide support to other PHAs through support groups.

In the best-case scenario the services of these care-givers are sometimes provided free of charge at one site by a specialized NGO. In many cases, however, a person wishing to gain access to care and social services may need an understanding how the systems and procedures of various institutions operate. Many PHAs are unprepared for the administrative, financial and legal barriers that they may encounter. To cope with this need, a new type of support service called the "buddy" system has emerged. Buddies are individuals who are less directly involved with but who know about HIV/AIDS, the services available and the rights of PHAs. A buddy is close enough for the PHA to approach, has sufficient time to devote to him/her and can be asked almost everything. The Rio de Janeiro Buddy System described in the Country Watch section provides an example of such a project for gay men in Brazil. In other parts of the world where the buddy system is non-existent, the PHAs must often rely on support provided by family and friends.

Many care-givers find it hard to detach themselves from their work in the face of constant reminders and demands from friends, neighbours, lovers, and the media. Their work lives and leisure time are never free from AIDS, sometimes leading to excessive emotional involvement and burnout. Many care-experience difficulties in confronting death and the dying process of those whom they are supporting. Care-givers are not always from the same social category but can have difficulty with the dying process in those cases too.

AIDS care-givers also often live with the constant fear of being infected. In addition to their risk of acquiring HIV through personal behaviour, care-givers face the possibility of acquiring HIV and related infections through care giving, e.g., through needle-stick injuries and airborne infections, such as tuberculosis (TB).

Lack of resources and supportive policies: The principle of observing "universal precautions" (safety measures to prevent infection during care-giving) is aimed to protect all care-givers from exposure to the body fluids of all patients regardless of their known or suspected HIV status. Well implemented observance, universal precautions can reduce chances of accidental infection, allay fears and perhaps reduce the stigma which some care-givers attach to HIV patients or particular groups such as sex workers or homosexuals. PHAs who care for other PHAs also need to be protected from re-infection with other strains of HIV/AIDS and opportunistic infections.

The supplies and equipment needed to implement universal precautions are nevertheless expensive and sometimes receive lower priority in budgeting than medicines. Not many health-care policies recognize that protection of care-givers, including family members, is part of good-quality care.

Living with HIV/AIDS as a care-giver: PHAs who are care-givers also need to seek care for themselves. They may experience difficulty in changing from their role as a provider to that of a patient. Sometimes their fellow care-givers may ostracise them because they associate HIV infection with a stigmatized behaviour such as being gay or having multiple partners. This makes it difficult or impossible for many care-givers to seek care, especially if they are professional health workers themselves.

HIV-positive health workers are a hard-to-reach group. They often have poor health-care seeking behaviour themselves, because they assume that they know how to care for themselves. Other care-givers such as partners and family of a PHA may feel that it is selfish of them to seek care for minor ailments when they care for patients who are sicker than they are.

Few AIDS care organizations and hospitals have a user-friendly system designed to care for their own staff. In most organizations the HIV-positive care-givers are expected to queue together with the clients to access care. And often there is no confidentiality to protect information about their personal situation from other care-givers. Sadly, many care-givers working in excellent support end up seeking care elsewhere anonymously. Indeed HIV counsellors die of AIDS without receiving any counselling or social support.

Human rights issues: WHO and UNAIDS do not favour mandatory HIV testing of patients in order to protect surgeons and other health workers from HIV infection. Nor do they support the testing of surgeons to protect their patients from transmission of the virus. Mandatory testing is coercive, against the human rights of patients and health workers and has no proven efficacy as a preventive measure. Nevertheless, it is done in many hospitals around the world. Similarly, the rights of care-givers to confidentiality, especially surgeons, are often abandoned when they are found to be HIV-positive. Confidentiality is very important to avoid increasing people's vulnerability to violence or discrimination.

A different set of human rights involves the needs of PHAs. People should not be denied the right of access to basic needs such as food, shelter, schooling, employment, appropriate drugs and care just because they are HIV-positive. Unfortunately, many care-givers must fight for their clients to gain access to these requirements. People's immediate material needs are sometimes more important to them than preventing transmission of HIV and may force them to do certain things, like trading sex, that may increase the spread of HIV.

Care-givers can advocate for respect of human rights in social policies passed by governments and community leaders. They can, for example, present scientific information to policy-makers and lobby the state on treatment issues related to HIV/AIDS. AIDS workers can also influence attitudes such as an outreach project in India that persuade local police not to arrest sex workers who distribute condoms.

Another basic need, which is often forgotten, is the right to be with one's family and loved ones. When families reject PHAs, care-givers may need to work with the families to restore this right. PHAs experience prejudice and discrimination because of their HIV status; additionally, they may be stigmatized because of their lifestyle, sexual orientation, occupation and race. Prejudice stops people from being open about their behaviours such as anal sex, same-sex activities, injecting drug use and exchanging sex for money. By hiding the behaviours that may be putting them and their loved ones at risk, they cannot receive appropriate counselling, care and support so combating prejudice becomes another challenge for care-givers.

Breaking the news: PHAs often experience severe stress in their personal relationships, e.g., when the partner or family finds out about their illness. If the care-giver can obtain the PHAs permission to discuss their problems with members of their social network, these people may need counselling support as well. The care-giver should have the same sensitivity when breaking news of HIV infection to the family as when breaking this news to the client. Some clients refuse to tell their social networks. The care-giver should find out why and address these issues so that the client might change his or her mind.

Good communication with loved ones can result in support rather than discrimination of PHAs. Families of stigmatized individuals such as homosexuals, commercial sex workers and drug users have been effectively educated to support them.

Encourage group support: In this issue examples from Vietnam, Cuba, Brazil and Peru describe projects for self-help and support groups of PHAs. Groups of people with similar problems and fears can offer a safe supportive way of sharing information and discussing better ways of coping. Group therapy allows individuals to see how others are coping with HIV/AIDS and helps reduce feelings of isolation and despair. Group support may also be found in a broader social context, e.g. within women's organizations or religious groups.  

Caring for care-givers: Working with PHAs can be stressful. It is important that they can discuss their feelings with care-givers, but the care-givers also need support. Support networks among care-givers with activities such as regular interdisciplinary meetings with professionals and/or community volunteers can be helpful. Time-out measures and job rotations are also vital in reducing care-giver stress. To give care-givers a sense of psychological achievement the measure of success of care can be shifted away from "cure" to a more achievable outcome such as "patient comfort".

As mentioned above policies and procedures that ensure protection of care-givers and patients alike against exposure to HIV and other infections should be applied to all patients and care-givers regardless of their HIV status.

Responding to the needs of PHAs: Many of the projects described in this issue of the Exchange have a common feature: providing for the basic needs and wants of PHAs. AIDS work is almost impossible if it does not meet such needs. The provision of home-based care, counselling, legal aid, food and shelter has become part and parcel of all community-based HIV/AIDS prevention and care programmes. A project in India provided basic services and improved the working conditions of sex workers; this yielded major dividends for prevention work as well. Relations with the target community became easier, condom use increased and selection and training of peer educators became easier. This project also had an influence on the surrounding community and leaders. Hostility towards sex workers from neighbouring villages decreased, police harassment decreased and several villages adopted condom only policies.

In conclusion, prevention work should create an enabling environment for HIV/AIDS-related care. HIV education for the community should go beyond prevention messages, including messages against discrimination of PHAs. When such messages succeed encouraging communities and families to show love and support to PHAs, everyone benefits.

Samuel Kalibala, Medical Associate, Population Council, P.O. Box 17643, Nairobi, Kenya; Tel: +254-2- 713-480; Fax: +254-2-713-479; e-mail: skalibala@popcouncil.or.ke