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
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
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