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How to deliver care for people with HIV/AIDS and their families


What is in this guide?

Millions of people are already HIV positive and many of them have developed full-blown AIDS. In this guide, we look at support, treatment and care for people who are HIV positive and for their families.

This guide contains the following sections:

  1. Overall approach
  2. Emotional support
  3. Staying healthy – wellness programmesPoverty alleviation and food programmes
  4. Government grants
  5. Treatment, clinics and hospitals
  6. Home-based care
  7. Dealing with death

This web site contains the following guides on HIV/AIDS

Important things to know about HIV/AIDS

Introduction to community projects on HIV/AIDS

How to run HIV/AIDS prevention and education projects and campaigns

How to care for people living with HIV/AIDS and their families

How to care for children affected by HIV/AIDS

How to coordinate local community projects on HIV/AIDS

How to develop a municipal AIDS strategy


  1. Overall approach

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.

  1. Emotional support for people 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.

  1. Staying healthy – wellness programmes

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.

  1. Government support and grants

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

  1. Poverty alleviation

Keep employment

One of the most important ways of stopping people who are affected by AIDS from becoming impoverished because of the disease is to make sure that those who are working can stay in employment. This means that employed family members should not stay at home to look after people who are ill unless this is unavoidable. People with AIDS should be encouraged to work as long as possible.

Income creation

Micro-lending projects should be encouraged for affected families to help them launch a small business or enterprise from the home. The micro-lending projects should be properly run and supported and not be the same as micro-loans that you get at huge interest and which further impoverish people.

Small employment creation projects can also be started. For example, in Khayelitsha in Cape Town, the Wola Nani project has been very successful in providing a small income for women living with HIV/AIDS. They have started a beadwork and craft workshop where people learn skills. Many of the women can do the work at home and then the project sells and markets it for them. Wola Nani sells many of their products overseas.

Grants, food and material support

Where family are already impoverished, it is very important to make sure that they get the social grants that they should have access to (see Section 3 above on Grants). Food parcels should be distributed to impoverished families -it is very important that when you distribute, you try to get food to feed the whole family and not just the person who is ill. If only the ill person gets food parcels, they will share it with the whole family anyway and are unlikely then to benefit from it. More sustainable projects should be launched in the community – for example,food gardens to help people grow their own nutritious food.

An important part of poverty relief is food, clothing and material assistance. The proper distribution of materials needs good coordination. You will need the following:

A good plan and volunteers to collect food and materials from government, businesses and the public

A place to receive materials and a way to transport them

A safe place to store materials

A coordinating committee made up of project leaders plus key people from other welfare and community services.

A list of people who need support and the organisations that can get the support to them – a distribution system.People to sort materials and make up parcels for distribution.

A transport system to get parcels to distributors.

  1. Medical treatment, clinics and hospitals

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.

  1. Home-based care

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/HospitalTesting, counselling, treatment, medication
2. 10 nursesTraining 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 caregiversWellness, 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.

  1. Dealing with death

It is very important to make sure that people that are ill and are likely to die,die prepare properly. This will help them to not worry too much about what will happen to their children and their families after they have gone.

They should do the following kinds of things:

Identify guardians from among their family or friends who will look after their children

Write wills to ensure that their land or belongings are passed onto their children;

Sort out any bank accounts or insurances to make sure that they will pass easily to the people that will need it;

Create a memory box for their children. This includes things like family photographs, important documents like letters. Many people whose children are still small, also want to write a letter for the children to read when they are bigger that tells them what they feel about their children, what their dreams are for them and how much they care about them.

Efforts should also be made to ensure that people spend their last days in comfort, in familiar surroundings and with the people they love. This will help them to die with dignity.

Funerals can be very expensive and many people cannot really afford to bury their loved ones. Try to find ways to make funerals more affordable and organise community assistance.

Municipalities and religious organisations should work together to make sure that poor people can access paupers burials. These are free funerals paid for by the municipality for people who cannot afford them. Many people think that paupers burials are not real funerals and that you cannot go to the grave.

Family are allowed to attend these funerals and a service can be held at the grave. Try to find ways to make these funerals dignified and make sure that people have access to them if needed.


Index

HIV/AIDS Prevention |   Care for Children   |    Care for People with HIV    |   HIV/AIDS and Municipalities    |   Community Action  |   How to coordinate work around HIV/AIDS   |   How to set up Support Groups


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