Care and support for the HIV-infected and their families

In the early years of the HIV epidemic, attention in both programming and monitoring and evaluation focused on prevention of infection. Now, early prevention failures are turning into care needs. Already, there is an urgent need for health care for people living with HIV/AIDS. A large proportion of hospital beds are occupied by patients with HIV infection in many countries, and given the chronic nature of the disease and the dynamics of the epidemic, the burden of HIV on the health care system will increase in most countries in the future.

Programme goals

Like prevention, the term "care and support" covers a multitude of different programming areas and services. These include clinical management, nursing and home care, counselling and psychological support for those infected with HIV and their families, and social support for those infected with HIV, their families and communities. Some areas of programming that fall in the ambit of care and support, such as counselling and testing and the reduction of stigma and discrimination, are dealt with in separate parts of this guide.

Most countries dream of providing a full range of services from anti-retroviral therapy to counselling support for family caregivers, and a few developing countries, mostly in Latin America, come close to doing this for at least part of the population. The reality in most high-prevalence countries is far more rudimentary, however. Basic primary health care was often patchy even before the HIV epidemic, and is now over-stretched where it does exist. Secondary and tertiary level facilities are only available to a small fraction of the population. The HIV epidemic has increased the strain on health systems at all levels. Unable to provide adequate care through the health system, many countries are turning to community-based models of care. The capacity of communities to provide this care is not easy to assess.

The identification of core and additional indicators in the area of care and support will vary considerably according to a country's strategy for providing care and support. Where the emphasis is on community- and home-based care, the indicators of coverage may be considered as core. In countries that are concentrating on the widespread provision of more sophisticated medical care for those with HIV, facility-based indicators will take precedence. The identification of core and additional indicators in this guide is based on the needs of resource-poor countries where HIV prevalence is highest--essentially the high-prevalence countries of sub-Saharan Africa. Countries with generalised epidemics but different resources will make different choices.

Key questions

• Is there a national policy to incorporate care for HIV-associated conditions into medical curricula?
• Are drugs for opportunistic infections included in the essential drugs list?
• What is being done to care for individuals with HIV and their families?
• Is the coverage of services adequate?
• Is the quality of services adequate?

Measurement challenges

Monitoring of care and support is not easy. In the first place, HIV status is rarely known and can not be asked about in population surveys for M&E purposes, so it is impossible to know how many people with HIV have access to the care and support they need. Health facility-based surveys give no idea of coverage, and may give only a limited idea of the extent to which care is given at the "appropriate" (most accessible and cost-effective) level of the health care system.

Even when people are being cared for, the need to protect patient confidentiality stands in the way of any systematic assessment of the quality of care. Direct observation of care provision may be possible for conditions which are commonly associated with, but not exclusive to, HIV. "Exit" type interviews with those living with HIV are only rarely possible, and are hard to generalise. Interviews may, for example, be attempted in the context of an anonymous self-administered questionnaire of people active in support groups for people living with HIV, but this is a selected population that is usually far from typical of all those living with HIV.

Another difficulty in assessing quality and completeness of care is in setting the "gold standard" or even the minimum standards of care in a given country. Few nations have any clear idea of the services they expect to provide for those living with HIV, either at the community level or within the health system. Fewer still have formal guidelines for care and support, against which service quality might be measured. WHO is actively developing minimum standards of care in these areas, but much remains to be done. What constitutes adequate orphan support? Help with food, support for school fees, psychological counselling? What about home-based care for people with AIDS? Is it possible to define, let alone measure, "quality of life" of individuals or families affected by AIDS? Until standards for these services are set, it will be difficult to monitor implementation, let alone to come up with internationally comparable indicators.

Providers of care and support at the community level are often small private organisations reacting to an urgent local need. They have limited capacity to provide services, let alone to collect data and feed it in to a monitoring and evaluation system.

Care and Support Indicators

1. Medical personnel trained in the care of HIV-related conditions
2. Health facilities with the capacity to deliver appropriate care to HIV-infected patients
3. Health facilities with drugs for opportunistic infections and palliative care in stock
4. Households receiving help in caring for chronically ill young adults
5. Households receiving help with orphan care