People with HIV/AIDS
can live healthy lives for longer if proper care and support is provided.
Your immune system can be strengthened by medical treatment, food, rest
and exercise. You can cope much better if you are happy and feel productive.
Emotional support and a positive attitude will help you to avoid depression.
A lot can also be done to avoid the devastating effects that illness
and death have on families and children.
At the moment families
and sometimes just individuals, cope with HIV/AIDS without much community
support. In most cases, very few people know that someone is HIV positive
and when they become ill, their families and children bear the burden
alone. Children and partners also have to deal with the grief of watching
a loved one suffer and die. The research found that most families who
lost someone, spent about one year nursing the person once they became
seriously ill.
Recent research
shows that about 40% of families where someone is ill with AIDS, survive
on less than R1000 per month. Illness and death of a breadwinner usually
increases poverty. Poor people do not have the resources to provide
proper care for someone with HIV/AIDS.
Many countries in
Africa and South America have developed community-based programs to
deliver better care and support for people with HIV/AIDS. There are
a number of key things that can be done:
Organise counselling
and emotional support for people with HIV/AIDS and their families.
Set up organisations
that bring together people living with HIV/AIDS to fight for change.
Set up wellness
programmes and medical treatment to help people keep their immune
systems strong and fight opportunistic infections.
Organise grants,
food parcels and poverty alleviation projects to help families survive.
Provide home-based
care and medical treatment for people who are ill.
It is very important
to deal with all the things listed above. Counselling without nutrition
will not keep someone alive. Clinic treatment without home-based care
will not provide for people once they are bed-ridden.
It is important
to target people living with HIV/AIDS and their families for support.
The families have to look after and support the person with HIV/AIDS
– they themselves need emotional support. They also have to deal with
prejudice from the community and need information and training so that
they can protect themselves and provide better care.Many of the things
that should be done can also support people with illnesses other than
HIV/AIDS. For example, home-based care should target all people who
are bedridden. Programmes to support orphans should target all children
in need. Poverty alleviation and state grants should target all who
need it.
In September 2002,
the Department of Health launched a new campaign to build a more caring
and supportive society for people affected by HIV/AIDS. It is called
Khomanani – a Tshonga word that means "caring for each other". You can
get more information about what you can do by phoning 0860 222 777.There
are many examples of well-integrated projects from all over the world:
In Sao Paolo in
Brazil, Catholic nuns started Project Hope to provide support and care
for families affected by AIDS. They have more than 100 volunteers who
each give a few hours of their time per week. The volunteers each visit
a few families where parents are ill. They provide basic care, counselling
and help care for children. The project also looks after children once
their parents have died.
In many parts of
Africa, health services work closely with community and church volunteers
to care for people who are ill - especially in rural areas that are
far from other services. Chirumhanza (Zimbabwe), Kitui (Kenya) and Kikovo
(Uganda) are good examples of places where health services extend the
care and support they can give by using home-based care.
In South Africa
there are also many projects that do very good work. Most of them work
with a local hospital or clinic. Affected families are offered support
and trained volunteers visit them at home. When people need medicines,
grants and other support, the volunteers help them to get access to
those things. The Tateni Home Care Services in Mamelodi and the Hospice
project in Port Shepstone are two of the oldest home-care projects.
In Thailand, the
Sanpatong Family Care Project does home-based care and helps to set
up support groups for people living with HIV/AIDS and their families.
The stigma surrounding
AIDS makes it a more difficult disease to live with for people with
HIV/AIDS and for their families. Loneliness, anxiety and depression
make people sicker and more vulnerable when their immune systems are
weak. Families cannot support and care for someone who is ill if they
themselves are depressed and scared.
Many projects concentrate
on basic first aid for people who are already ill. It is important to
also focus on emotional support for people who have HIV or who are not
yet bedridden. It is often best for people to organise themselves into
activist groups or support groups where they can share their experiences
and feelings with other people in similar situations.
Family members who
are looking after people who are ill also need support and where possible
support groups should be set up for children who are coping with death
and dying.
Support
groups
Here are some ideas
for organising support groups. They are based on the experiences from
many different countries. Support groups usually do the following types
of things:
Organise meetings
where people with HIV/AIDS can get together and discuss their feelings,
common problems and ways of coping
Teach people how
to look after themselves and discuss symptoms, illnesses and treatment
Organise food
and poverty relief to help people survive
Organise social
events where people can be open about their status and relax with
each other
Organise talks
and presentations from experts
Set up an organisation
that works for people with HIV/AIDS and get people to join.
For families, support
groups can be used to:
Teach people about
HIV/AIDS and how to care for someone when they get ill
Talk about feelings
and give families emotional support to help them cope
Help families
to get access to government grants and relief
Put them in touch
with services and projects that can help – like home-based care
How do you set up
a support group?
There are many ways
to form support groups. Here are some examples:
Regional groups
that work as an organisation to set up local support groups. In each
local area, you can use personal contacts and word of mouth to get
people to join a support group. Ask counselling and testing services,
nurses, social workers, churches and schools to refer people to your
group.
Support groups
that meet at clinics, with social workers or at churches and other
religious institutions.
Students who set
up a group on campus.
Support groups can
be informal – you just need a group of people who share their problems
and discuss ways of helping themselves and each other. It is good to
have a small committee that coordinates the programmes and makes sure
that new people are made to feel welcome. The committee should also
link with other projects and services in the areas and make sure that
they all know where and when the support group meets.You can also set
up a branch of National Association of People Living with HIV/AIDS and
get ideas and help from them. Social workers from the Department of
Welfare (Social Development) can also help. If you are part of a religious
group, organise a support group for the congregation. You do not need
a professional or a counsellor to run the group – members can do it
themselves. When you need advice or training, ask professionals to come
and help.It is important to decide early on if your support group is
going to be public or secret. It is easier for people to find out about
the support group if it is public – for example if you can put up notices
that you meet every Monday at 8pm at the local church hall. At the same
time, many people will be embarrassed to be seen outside such a meeting
if no one knows they are HIV positive. If you want to advertise, it
may be best to call the meeting "HIV/AIDS Action meeting" or " HIV/AIDS
information meeting". If you make it clear it is only for HIV positive
people, many may stay away.If you do not want to advertise, it is easier
to keep the support group secret. You can meet quietly at someone’s
house. You can also disguise the meeting as a prayer meeting or a cultural
group or something else. You have to find the way that works best in
your area.Other forms of emotional support
Support groups are
not the only way of organising support. It is very important for people
to get individual help with their problems and to feel that the community
accepts and cares for them. Here are a few more examples of what can
be done:
Counselling and
advice – make sure that counsellors are available at clinics and advice
offices to give people emotional counselling and practical advice
about their problems.
Role models and
public support – local leaders like politicians, community leaders,
sport stars, traditional leaders, business people, etc, should be
open about HIV/AIDS, should mobilise people to volunteer and help
in projects and should publicly support any people who are open about
being HIV positive. This will help to make people with HIV/AIDS and
their families feel that they are accepted and supported by their
community.
Community support
– awareness campaigns and public events that mobilise the community
to support HIV/AIDS projects are very important. When all people see
HIV/AIDS as their problem, the people who are most affected will no
longer feel alone and isolated.
Medical treatment
is not the only way to stay healthy. If you are HIV positive, it is
very important to keep your immune system as strong as possible. This
will help you fight diseases and infections. Food, exercise and lifestyle
are all important.
Here are some of
the things we should do:
Educate people
with HIV/AIDS and their families about healthy eating [see information
in box below]
Start vegetable
garden projects to help provide the right food types to people who
cannot afford them
Start food projects
that collect food from supermarkets and farmers and distribute it
to people who need it.
Keeping
a healthy body
People living with
HIV or AIDS need different foods from healthy people. HIV/AIDS and the
medicines people have to take can make you lose a lot of weight, feel
cold all the time and get serious stomach problems. This will make you
weaker and more vulnerable to serious infections. Because you easily
get infections, it is also very important to clean and cook food properly
and to drink only clean water.
Good food
Drink two litres
of water a day
Drink sour milk,
milk or yoghurt
Eat beans, lentils,
eggs or meat every day if you can – beans are just as good as meat
if you put a tablespoon of uncooked sunflower oil with it before serving.All
vegetables and fruits are very good
For a healthy
stomach, eat raw garlic, raw carrots or dried pumpkin seeds.
Eat a lot of grains
and starch – maize, rice, sorghum, brown bread
Bad foods
Sugar is very
bad for the immune system and causes stomach problems
Fried foods and
cooked oils stop the stomach from being able to digest food
Spicy food can
also cause stomach upsets – do not eat too much
Do:
Keep yourself
occupied and interested in things to avoid depression
Try to exercise
without straining yourself
Get enough sleep
and rest
Find people you
can talk to about your feelings
Do not:
Smoke, drink or
use addictive drugs
Go on diet or lose too much weight
People who live
in poverty will find it very hard to stay healthy. We have to make sure
that poor people get access to food projects, government grants and
other poverty alleviation projects. (See next section)
It is very important
that people with AIDS do not get too much stress and that you feel good
about yourself and your life. It helps to stay active and not become
bed-ridden or depressed. Any kind of activity is good – limited exercise,
gardening, social activities and sports’ groups. People should obviously
work for as long as possible as this will also help you to feel good
about yourself. Emotional support is vital and people who cannot talk
to anyone else about their condition will definitely become ill more
quickly.
People with HIV/AIDS
and their families can get support from the government in a number of
ways. Some grants are only available to people who are poor. Social
workers and advice office workers are the best people to get help from
if you need government support.
Below is a list
of the main forms of support and how you get it.
Disability
grant
If you are unable
to work because of illness and have very little income, you can get
a grant of R640 per month. A means test is used to decide if you are
poor enough to qualify.
If you need a lot
of care and nursing you may be also able to get a grant in aid of a
further R120 per month.
Foster care
grant
If you are the official
foster parent of a child, you can apply for a foster care grant of R450
per month. You have to provide the child with adequate food, medical
care, clothing, schooling and shelter.
Care dependency
grant
A care dependency
grant of R620 is meant for children who are ill or disabled and need
special care. It can be used for children who are ill with AIDS. Parents
or foster parents or anyone who is responsible for looking after the
child can apply. You can get a care dependency grant even if you already
have a foster grant.
Child support
grant
Anyone who is poor
and looks after a child under 7 years old can apply for a child support
grant of R140 per month. A means test is used to work out if you are
poor enough to qualify for this grant. The person who applies cannot
earn more than R1100 per month if they live in an informal settlement
or rural area, and more than R800 per month if they live in an urban
house.
Social relief
Social workers can
also give temporary relief for people who are in urgent need of support.
Sometimes you can wait for a few months for your grant and the social
worker can the give you temporary relief – this will be food or money.
It will not be a lot and it will only be given to you for a short time.How
to apply for grants
Go to your nearest
Welfare office (Department of Social Development). If there is no office
near you, go to the nearest magistrate’s court.You will need different
papers for different grants. The social worker will give you a list.
On your first visit, take your ID book and any other proof you have
that may be needed for the application. Here are some examples:
Your ID document
Medical certificate
Proof of income
and assets
Marriage certificate
Death certificate
of parents and birth certificate of children if you are looking after
orphans
Affidavit from
birth mother if the children’s real parents are still alive – to say
why you are taking care of them and that she agrees with you doing
that.
Letter from your
employer if you have any income
When you become
ill with AIDS, you need treatment for many things. Common infections
can kill you more easily if your immune system is weak. If you have
other diseases like TB or sexually transmitted infections, you also
need treatment.
TB
It is very important
to treat TB since this is one of the main causes of death for people
with AIDS. Most clinics and hospitals have got TB treatment programmes
(DOT programmes) that are quite well developed. The Home-based care
should be linked with the DOT programme which supports patients to take
their medication.
Infections
People who are getting
ill from AIDS should also be given broad-spectrum antibiotics to prevent
things like lung infections that can easily kill people with weakened
immune systems. Opportunistic infections, like thrush and gastro should
be treated. Any sexually transmitted infections should be treated.
Vitamins
Good nutrition is
one of the most important ways of strengthening the immune system and
can be supplemented with vitamins, where this is affordable.
Anti-retrovirals
Anti-retrovirals
should be taken if they are available and affordable. It is very important
to understand the side-effectsside effects and the correct way of taking
anti-retrovirals since they can also make people feel quite sick. When
you take anti-retrovirals, you must be tested quite often to make sure
that you are getting the right dosage. Some employers are offering anti-retrovirals
and some people on medical aids can afford to take them. At the moment,
they are not available through the public health system, except in very
few places where NGOs are doing research. The government will soon start
with pilot sites to see how possible it is to distribute anti-retrovirals.
In developed countries,
anti-retrovirals have made a big contribution to fighting AIDS and preventing
the spread of AIDS. More people come to be tested once there is some
form of treatment available. If the anti-retrovirals work well they
will reduce the viral load. This means the person has a smaller presence
of the HIV virus in their blood and it is less likely they will pass
it on to others.
In Brazil, the government
has made anti-retrovirals available to everyone who needs it. They produce
generic versions of the medicines and this makes it much cheaper. Instead
of paying about R100 per day per person for AZT, it only cost Brazil
R10 per day to treat a person. They also developed a support system
so that people living with AIDS were trained and supported to take their
medicine in the right dose.
In Cape Town, the
organization Doctors without Borders has set up successful antiretroviral
treatment programmes in local townships. They are using a similar approach
to the Brazilian one.
The role
of hospitals and clinics in treatment and care
Hospitals and clinics
are the only places poor people can go for treatment. All medication
is only available through hospitals or clinics. Testing is also coordinated
through clinics.
When people get
very ill with infections that can be treated, they should be hospitalised
if possible. If there is nothing the hospital can do for someone, it
is often best for them to stay at home with the people they love. It
is vital that hospitals and clinics work with home-base care and other
community organisations to make sure tat there is ongoing care for someone
who is discharged from hospital.
How to set up home-based
care
People who are ill
with AIDS need much more care than our hospitals and clinics can provide.
It is vital that health workers work with communities and families to
make sure that people who are ill at home get proper care. This is where
the idea of home-based care comes from.
At a community or
district level, a hospital or clinic should be co-ordinating a program
in terms of providing treatment. The main role they should play is to
provide the following to patients:
Testing, diagnosis
and counseling
Treatment and
medication
Referral to support
groups or other projects.
The hospital/clinic
can play this role and deliver this service for thousands of people
with HIV/AIDS. It is very important that the more direct support and
care roles are played below a hospital level so that the hospital can
do the things that it does best – diagnosis, treatment and medication.For
every hospital or clinic, a number of nurses or health workers should
work more directly with the ill. They should take responsibility for
training volunteers and supervising their work. They should also do
medical assessments and home-based treatment for people who are very
ill and cannot be serviced by volunteers.
At a community level,
volunteers should be recruited and trained to work with people who are
ill. Volunteers can be drawn from people who are already HIV positive
or from community based, religious and other organisations. Volunteers
should carry out home visits and do direct care work where necessary.
They should call in health workers when they cannot deal with the case.
Family members are
most often the direct caregivers for people who are ill. Families do
the basic washing, cleaning and feeding and it is important they get
both training and emotional support. Where the patient does not have
a direct caregiver, the volunteers will have to do this work. If family
members are available to provide some care, they should be trained by
the volunteers who can also give some emotional support. Family members
over 12 can be trained in basic hygiene, dealing with simple infections,
basic nutrition, bed baths dealing with blood and body fluids. They
should learn how to protect themselves from infection - For example,
covering your hands with a plastic bag when you deal with blood can
save your life. The volunteers should give these families access to
information, make referrals to other service providers and distribute
food parcels and so on. They can also help people who are ill to get
medication from the clinics through their links with the health workers.
People with HIV/AIDS
can look after themselves while they are able to. They should be encouraged
to keep themselves as healthy as possible and should be targeted for
specific programs such as:
Wellness programs
to keep as healthy as possible and to strengthen immune systems
Nutrition programs
Training in basic
hygiene and treatment for common infections like skin infections.
Psychological
and emotional support
They themselves
should be trained in basic health care and where possible should be
drawn into support and other activity groups.
A good model for
a community HIV/AIDS care project could be:
| 1. Clinic/Hospital |
Testing,
counselling, treatment, medication |
| 2. 10 nurses |
Training
volunteers, medical assessment, home-based treatment for serious
cases |
| 3. 200 volunteers |
Home-based
basic care, support for caregivers, spreading information, referral
to services, food parcels |
| 4. 2000 patients
and/or family caregivers |
Wellness,
nutrition, psychological and emotional support, basic health care |
| |
|
It is very important
for home-based care projects to target all people who are ill and being
looked after at home. This way, people who receive visits from home-based
care volunteers will not be immediately identified by the community
as people with HIV/AIDS. This will avoid people not joining the programme
because of the stigma attached to HIV/AIDS.
The Work
done by Home-based Care Workers
Most Home-based
care workers will do very basic things when they visit patients at home:
They will assess
the person’s condition and the kind of care they are getting from
the family.They will do some training to help the family to improve
their care.
They will distribute food parcels and make sure that the family is
getting the social grants that they are entitled to receive.
Where necessary, they will refer the person to clinics or hospitals
for better treatment.
They will do some counselling and support to make sure the family
is coping emotionally.
In cases where the
family is not able to look after the person themselves the volunteers
will visit the person who is ill a few times a week and give them a
bed bath, look after pressure sores and make sure that there is food
in the house.
In cases where people are very ill, the nurses should be involved in
home-visits and in very serious cases, doctors may be required to visit
people at home.
Advantages
of home-based and community care
It frees up the
number of hospital beds available for those who are very ill or suffering
as a result of other diseases and accidents.
It involves the
community in directly taking responsibility for HIV/AIDS.
It allows people
who are ill to spend their days in familiar surroundings and stops them
from being isolated and lonely.
It gives families
access to support services as well as emotional support.
It promotes a holistic
approach to care and does not only focus on narrow health needs.
It is pro-active
and helps keep people healthy for longer.
It involves the
patients in their own care and gives them more rights to decide about
what should be done.
Many of the common
diseases or conditions can easily be managed at home with the right
training.
It takes a big burden
off the family, especially children.
Home-based care
focuses on the individual patient and her/his needs.
It avoids unnecessary
referrals or admissions to hospitals and institutions.
It helps to co-ordinate
different services in the community and get them all to people who need
it through one volunteer.
It helps to collect
data and to record information about what is happening in the community.
It makes sure that
there is consistency of services and that everyone gets access to things
like grants, projects and food parcels.
How to get
home-based care to people who need it
AIDS is still a
hidden disease and it can be difficult to reach the people who need
home-based care. Remember to run home-based care as a project for all
people who are ill at home and not to make it only for people with AIDS.
This will make it easier for people to come forward and ask for help.
Home-based care
volunteers can publicise the service by doing door-to-door work in communities
and explaining what is offered. Religious and other community organisations
can also be targeted for outreach sessions to publicise the service.
The most important
contact method is for the people living with HIV/AIDS themselves to
ask for support. It is important that every health worker and social
worker who may come into contact with someone who is ill, tells them
about the home-based care service and how to get hold of it. Support
groups must be involved in making referrals to home-based care programmes.
From the first moment
when someone tests positive, the counsellors should offer a family visit
to help explain the situation to the family. The family should then
be put on a list to make sure that follow-up and support is offered
to them.
When people with
AIDS visit clinics to get treatment for opportunistic infections, they
should also be offered home-based care visits. Some people with HIV/AIDS
never get support from the formal health system and it is impossible
to identify them. Churches and schools should be involved in identifying
people in need and report it to the home-based care system or directly
inform the individuals so that they can access care. Teachers for example
may notice that a child is staying away from school and find out that
the child’s parents’ are ill. The child should then be told about the
home-based system and the teacher and a volunteer may visit the family.
First Visit
During the first
visit by volunteers to a family, it is important to explain the following:
What the illness
involves
What kind of care
is needed
How to do basic
and safe health care
To find out what
resources and time the family has available
To find out what
commitment the family has to caring for the sick person
To explain all
other services and grants available to the family.
The volunteer should
identify the level of support that the family will need and make sure
that initially visits are quite regular, so that problems can be picked
up early. 90% of people that are ill are cared for by their relatives.
It is important that the relatives are properly equipped to do this
work and get the emotional support they need. Where relatives are unwilling
to look after someone, the home-based care project will have to give
more regular support and make sure that the person is not neglected.
Involving
people with HIV/AIDS
Home-based care
volunteers can be drawn from any organisation within the community and
individuals should be encouraged to sign up. One of the most important
groups for recruiting volunteers is people living with HIV/AIDS.
They are very well
placed to play an important role in any of the following areas:
Counselling people
who have been diagnosed as HIV positive or who are being tested at
hospitals and clinics.
Forming and running
support groups for people living with HIV/AIDS
As volunteers
for home-based care projects
As community educators
who can talk from their own experience
Awareness events
As speakers at
awareness events
Special services,
vigils, cultural events etc.
Helping children
to cope with parents who are ill
As trainers for
volunteers
As representatives
on structures that are addressing HIV/AIDS and related issues
Training
All volunteers will
need training in the following basic things:
Nutrition – the
best food and lifestyle to ensure that the person stays healthy as
long as possibleBasic First Aid and Care and how to do it safely.
This includes bedbaths, pressure sores, dealing with body products
etc.
The basic diseases
and infections that a person with AIDS is likely to get and how to
care for that person in that condition
Referral systems
for medicine, tests, social grants, support groups, counselling, children’s
problems etc.Basic counselling skills to provide emotional support
for the person with HIV/AIDS as well as for the family members and
children
Cultural understanding
and sensitivity so that the volunteer does not appear tactless or
blunt and so upset the family or the person with HIV/AIDS.
Keeping
volunteers active
One of the biggest
challenges for a Home-based care project is to keep volunteers active
and involved. It is important to find ways of motivating volunteers.
Here are a few ideas:
If possible find
a way to compensate volunteers for their work – even if it is just
a small payment for transport and food.Make sure that the training
of volunteers is done formally and that people get certificates that
give them some qualification.
The Department
of Health and First Aid organisations can be drawn into this to make
sure that First Aid training is given and that the certificates are
accredited in terms of the National Qualifications framework. This
makes the project much more attractive to young people who have finished
school and who have not found jobs. Firstly, they will get a qualification.
Secondly, they will develop some work experience that will help them
when they look for future jobs. Thirdly, they will develop more self-esteem
and confidence.
Volunteers can
easily get burnt out and it is important to offer some counselling
and support as well. They should meet regularly with each other and
share some of their experiences and feelings.
Volunteers should
get proper supervision from project staff or senior volunteers to
make sure that they get ongoing training and emotional support.
The project should
also look after its volunteers in the same way that any organisation
has to look after its members. This means you should spend some time
building people’s morale and recognize the contribution they make.
For example, by giving people prizes, certificates or awards at community
meetings.
Organisations
also often fulfil a social role in people’s lives and it is important
for volunteers to have some fun together. You can organise things
like dances, functions, fund-raising events and so on, to help build
team spirit.
Some projects
in South Africa target unemployed women for recruitment as home-based-care
volunteers and try to organise a small payment for every visit. Other
projects target young people who cannot get jobs and provide them
with some training and certification. The work experience they get
can help them build their skills and perhaps assist with finding jobs.
It is very important
to be clear about issues of payment and training so that volunteers
understand what they are committing themselves to. Try not to raise
false hopes of payment if you cannot deliver because this will lead
to conflict between your project and the volunteers you depend on.
