Preface

Every year, throughout the world, an increasing number of people are affected by the HIV/AIDS pandemic, either directly or through someone they care for. People with HIV infection can remain healthy for some years, but it is assumed at present that all HIV-infected people will develop AIDS in due course. AIDS is a chronic disease lasting months or years, and a person with AIDS may move several times from the home to hospital and back again. Much of the care of those with AIDS therefore occurs in the home.

Home care means different things to different people, but whatever form it takes, it relies on two strengths that exist everywhere in the world - the family and the community. It is with the hope of stimulating and utilizing the strengths of the family and the community that this handbook has been developed.

Care at home provided by family, friends or neighbours is not without problems. Very few of the people giving this care have ever had any training in looking after sick people. Many of them will be concerned about their lack of knowledge and skills. They may also be concerned about catching AIDS themselves. Therefore the aim of this handbook is to provide health care workers with the information they need to help families gain confidence about their own ability to give safe, compassionate and helpful care to people with AIDS in their homes.

In many families and communities, it is the most basic needs - food, clothing, and housing - and the money to pay for them that are the major problems. AIDS can create many additional demands on family and community resources. The handbook takes this into account. No expensive equipment or medicines are suggested. In fact, they are usually not needed - clean water and soap, essential medicines and other things commonly found in the home, combined with the caring hands of the family, are enough.

The readiness of families and communities to provide care for persons with AIDS at home is important. In early stages of the epidemic (when few people are noticeably sick) there is often a high level of stigma, fear and lack of acceptance of people with AIDS. People are frightened or ashamed to admit they have a person with AIDS in their homes. This can make it difficult for health workers to involve families in learning about or providing care at home.

As more people are personally affected, the tendency for hiding or denying the disease decreases. As peoples' knowledge and understanding of HIV increases, their attitudes toward caring for persons with AIDS are likely to become more positive.

Home care is often the best way to look after someone with AIDS. There are many reasons why:

· Good basic care can be given successfully in the home.

· People who are very sick or dying would often rather stay at home, especially when they know they cannot be cured in hospital.

· Sick people are comforted by being in their own homes and communities, with family and friends around.

· Home care can mean that hospitals will be less crowded, so that doctors, nurses and other hospital staff can give better care to those who really need to be in hospital.

· It is usually less expensive for families to care for someone at home, for example they will not have to pay for hospital bills and transportation to and from hospital.

· If the sick person is at home, family members can meet their other responsibilities more easily. This can be difficult if they have to stay at the hospital, or have to travel frequently to help and to take food to the sick person.

· Sometimes hospital care is simply not possible.

The aims of AIDS home care are the same as those for any home-based health care programme:

· to prevent problems when possible,
· to take care of existing problems, and
· to know when it is time to get help.

Since care of AIDS at home is similar to care for many other illnesses, the advice given in this handbook can be used to help anyone who has the same symptoms for other reasons, such as malaria or cancer. It can be used by health care workers who may also work in other areas such as maternal and child health, nutrition or immunization. It may also be useful to social workers, religious people, counsellors and others.

The information provided is based on accepted international guidelines and the extensive programme experience of many individuals and agencies working to combat the HIV/AIDS pandemic. However, it is rare that there is only one "right" way of dealing with a problem and it is impossible to give all the answers here. Nevertheless, it is hoped that the advice offered here will prove helpful and will stimulate readers to start thinking about new ways to solve problems.

This handbook can also be used by health care managers seeking to improve the home care of those with AIDS. It is hoped that they will adapt the handbook to suit the specific conditions in their own country or area, and use it as a resource book for training health care workers.

The handbook is therefore designed to be adapted and revised in order to suit the specific health needs of people with AIDS, and the customs, special ways of healing, and local language of the region in which it will be used. During the adaptation process, unsuitable sections can be deleted and new topics can be added. Attention will also have to be paid to the drawings. The people shown in the pictures need to look familiar to those who will use the handbook. However, large-scale changes might prove to be expensive, and might reduce the resources available for the translation and widespread distribution of the handbook. It is therefore important to plan and budget carefully at each stage.

It is perhaps fitting that this handbook was developed during 1992, the year in which the theme for World AIDS Day was "A Community Commitment". Every community must become involved in the fight against AIDS and must be empowered to do so. It is only through an enormous commitment of resources - within and between communities at the international, national and local levels - that the world can hope to contain the HIV/AIDS pandemic and care for those who are ill.