This guide looks at ways of supporting children affected by HIV and AIDS. It covers children whose parents are ill or have died as well as children living with HIV and AIDS.
It has the following sections:
- Important principles
- Community child care committees
- Children whose parents are ill
- Children who are orphaned
- Children who are living with HIV and AIDS
The social stigma around HIV and AIDS, which prevents people from being open, increases the isolation of people in families affected by HIV and AIDS. Not only do they have to deal with their own grief and emotional suffering but also this is made worse if the community treats them badly.
The greatest impact of HIV is on young people. Many children whose parents are ill now are likely to become ill themselves in later years. In their childhood they get little emotional and material support and they often have to start playing roles that are usually expected from adults. In many families they play the adult role of maintaining the house and sometimes even trying to provide an income. Most of them play some nursing role and directly look after the parents who are ill. Older children also play the parent role to their younger siblings.
When parents die, very small children are often taken in by relatives. The survival of older children is often neglected and they are more vulnerable. In many cases, older children drop out of school to look after younger siblings. When they are not provided for by relatives, some end up living on the streets or barely surviving in very impoverished homes. These young people often end up being abused, or drift into gangs, the sex industry and crime.
There are three categories of children who need special care:
- Children whose parents are ill
- Children whose parents have died
- Children with HIV and AIDS
Most of the affected children (and the people who care for them) do not get the grants they have a right to get. (click here for foster, care dependency and child support grants). The main reasons for this are ignorance of their rights, lack of access and lack of the right documents.
Target all children in need
There are many different models of community childcare projects. The main principle should be that all children in need should be identified and supported in some way. A project that deals with children affected by HIV and AIDS should be integrated in other efforts to help children in need. This will also help to deal with the stigma and secrecy surrounding HIV and AIDS. If all children who have ill parents are supported, it will be easier for children to ask for help than if a project only helps children whose parents are ill with AIDS.
Keep children in their communities
Children should be supported in ways that help them to stay part of their community and family. The old-fashioned idea that children who are orphaned should be put in institutions like orphanages is no longer popular. When facing issues such as the illness and possible death of their parents children already deal with an enormous amount of stress. Moving them to an unfamiliar environment, away from their school and their friends and the neighbourhood they know, may only compound this problem for them.
During their parent’s illness some children build up informal systems of support in their communities. These could include a supportive relationship with a neighbour, a teacher, a minister of religion, a nurse, church volunteer or the family of a school friend. Where such a support system exists for a child, it is especially important to not take the child away from the community. (An exception might be if there are relatives living in another area who are willing to take the child).
It is also not good to separate children from their siblings when they have lost their parents. It is much better to keep them as close to their natural support groups as possible. If there are other members of the family who can take in children this is often better than fostering them out to different families or letting different families adopt different children.
Orphanages are expensive and are not very healthy places for children to grow up. It is much better to keep the children in the communities they come from and to make sure that they get adult supervision and support in a familiar environment.
Adoption is also not easy to organise, especially for older children. It is even difficult to find adoptive parents for babies if there is a chance that they may be HIV positive.
Coordinate services and use volunteers
Support must be well coordinated and reach down to the ground. This means that all services and organisations should work together to identify children in need and to make sure they get the right help. Welfare and health workers should work with churches and schools to identify children whose parents are ill or have died. At a local community level, volunteers should be used to visit families, help child headed families and monitor foster care and other projects.
Community childcare committees or forums are an option that has been used very successfully in different countries. A group of adults work together to take responsibility for organising support for vulnerable children in an area. Childcare forums can be set up by social workers, the community can elect volunteers or they can be appointed by various organisations. It is important that they have community support and some official status so that they can be effective.
The volunteers usually come from different organisations and religious groups. They can be volunteers and/or be selected by a community meeting. They find children in need and try to ensure that they are either linked to welfare services or that members of their family look after their needs.
The community childcare forums can also take responsibility for helping all children in need to get access to social workers and to child support or foster grants. They should also take responsibility that all births and deaths are registered so that children can get IDs and therefore access to social grants when they need them.
Community childcare forums can also help to screen foster parents and to monitor them to make sure that they treat children properly. Children in need are very vulnerable to exploitation and abuse. Some people take in foster children just to get the foster grants.
Community childcare forums should be linked to social workers from the government Welfare Department (Social Development) or the Child Welfare Society. They should get some training and report regularly to professional supervisors to ensure that they are doing their work properly.
It is important for the community childcare forum to work closely with public and private organisations in the area. These include offices of government departments, businesses, churches, NGOs, health services and schools. There are many ways in which the forum can work with such organisations. In a school, for example, the committee could work with the principal to set up a system of peer support.
Involving children in community events related to HIV and AIDS is an excellent way for children to learn and to feel less isolated. Community childcare forums should look at ways to facilitate involvement in events by children as appropriate.
Soon after its formation the members of the community childcare committee must develop a clear mission and clear, achievable goals. The Department of Social Development suggests the following as a model mission for community childcare committees:
“Mobilization of communities for early identification of children and families in need as to provide comprehensive care, (i.e. physical, emotional, social and economic and spiritual), which is sensitive to culture, religion and value systems in order to maximize the quality of life of orphaned and vulnerable children.”
This means that the committees should:
- Intervene as early as possible to work out what the needs of the vulnerable children and families are and plan to meet those needs,
- Try to meet a wide range of different types of needs. In addition to the practical needs of helping the children with getting grants, IDs, certificates, medical care, food aid, etc. Committees should also aim to provide emotional support, friendship and company. Committees should look at strategies to support the older children staying in school, connect the children with the family’s religious community (if applicable), try to connect them with other groups or services that might help them, arrange psychological counselling for the children, etc.
- Try to mobilize as many people from the community as possible to become actively involved in helping these children and families,
- Be very aware of the differing religions, customs and beliefs that the vulnerable children or families may have and make sure these things are fully considered when providing care.
- Keep in mind that everything the committee does should be towards the goals of protecting the children and ensuring the best quality of life possible for them.
In 2003, the Department of Social Development published a set of guidelines on how to establish childcare forums: Guidelines for Early Childhood Development Services. You can contact the Department on 012 312 7500 or through their website at www.socdev.gov.za to obtain a copy of the guidelines.
Another helpful publication by the Department of Social Development is the National Guidelines for Social Services Infected and Affected by HIV and AIDS. These guidelines contain information on how to develop community-based care services, types of financial assistance for children and much more.
MALUTI – A- PHOFUNG: A case study in Community Childcare Forums
One of the most devastating side effects of the Aids epidemic is the burden that falls on children and child-headed families. Poor communities have few resources to provide institutional support to orphans or children whose parents are ill. In Maluti-a-Phofung, a rural municipality in the impoverished former Qwa-Qwa homeland, an innovative new approach is being tested by the local AIDS council, the Education and Training Unit and Save the Children.
Community child care forums (CCCFs) have been set up in most of the 34 wards in the area. These are called together by ward councillors and are made up of 10 to 30 volunteers in each ward. The CCCFs visit all households to identify children and families in need and to offer support to them. Families are assisted with acquiring the right documentation, registering for social grants, and are put in touch with home-based care and nutritional support programs where they exist.
The CCCFs fall under the municipalities local AIDS council and provide a link between social workers, clinics and other government and welfare services and families in need. Where child-headed families are identified CCCF members try to take responsibility to provide more regular support to ensure that the children are attending school and being fed.
Ward councillors are playing a very active role in CCCFs in most wards and this has helped to provide impetus to the process, mobilize community volunteers and access government resources.
Each CCCF has about twenty members some of whom are members of other organisations. Depending on capacity and need, CCCFs are divided into four focus groups: Health, Education, Safety & Security. Each focus group has a specific range or tasks for its area of concern. The health focus group, for example, ensures that the children: 1) have access to primary health care, 2) are living in a clean environment, 3) get proper intervention when there is drug or alcohol abuse, and 4) are involved in the planting of vegetable gardens.
Members of different CCCF task teams are allocated streets and areas and go door to door using questionnaires and having discussions with parents and caregivers to identify needs. Community members are informed about HIV and AIDS which promotes understanding and lessens stigma and prejudice around the disease.
The CCCFs work closely with other organisations in the area including churches, childcare centres, school and crèches. Many members of churches and other groups have become involved in providing services through associations such as these. In one example of cooperation a church kept lists of ill people and vulnerable children in the area which helped the CCCF identify where help was needed.
A number of other municipalities in the Free State have adopted a similar approach and ETU is helping them to develop strategies and to train volunteers. The approach is supported by the provincial department of Social Development. Recently CCCF members from Maluti-a-Phofung also visited Limpopo with ETU trainers to set up a similar project. Community members are also encouraged to go for testing.
Children who have lost one or both parents need a lot of support. They have to deal with grief as well as survival. Most orphaned children are supported by relatives. They are usually older women and are often unemployed or on pension. The family will become poorer and will need food and financial support.
A large number of orphans stay on alone in the family home when their parents die. Older children look after young ones and try to find ways to survive. Thousands of children are living in desperate poverty in these child-headed homes. Many of them drop out of school and some turn to sex work or crime to survive.
Some children are taken in as foster children whilst others go to orphanages or other institutions. In this section, we look at the different options and the role child care committees can play.
Child-headed homes and care by relatives
We must find ways to support children who are looked after by relatives or by older siblings in child-headed homes. Community child-care committees are best to reach and support these children. Here are some of the things that community child care volunteers should do:
- Make sure that they get the government grants they are entitled to receive and help them get access
- Make sure they get food parcels and benefit from poverty relief programmes
- Try to keep children in school as long as possible and work with schools to organise support for children who cannot afford books, fees or clothing.
- A volunteer should visit the family at least once a week to check that children are coping, going to school and eating.
- Check that children are healthy and help them get healthcare, vaccinations and medicine when needed.
- Support children who are HIV positive and get them into medical and other support programmes.
- Work with churches and welfare organisations to collect clothes, bedding and building materials
- Help children get documents like death certificates and IDs
- Counsel children to help them deal with their feelings of loss and grief.
- Be an adult they can trust and come to with their problems
Foster care is provided by a family that takes in orphaned and other vulnerable children and looks after them. They do not adopt them and the state remains responsible for the welfare of the children. The Children’s Court has to officially appoint foster parents – this is usually organised by social workers.
The social worker writes a report to the Commissioner of Child Welfare and makes a recommendation for foster care for the child. You then receive a court order in terms of the Child Care Act which is the law which protects all children.
Foster care parents can receive a grant for doing the work and should use it to provide material and emotional support for the children and to ensure that they attend school. (See government grants). If foster parents do not fulfil these obligations, the children will be moved to another family. Foster care is better than orphanages because it provides a family life for children. It is still not always an ideal situation and many children in foster care can be neglected or even abused and exploited.
It is important for foster parents to be trained and monitored by social workers. Childcare committees should also visit foster families and talk to the children to check that they are receiving proper care. It is important if children are to feel safe and loved, that they are not moved from house to house. Therefore, people should be very sure before taking a child into foster care.
In some communities group housing (also called “residential care”) has been provided for children. This means that a number of different children who are orphaned will live in a house or homestead with one adult to look after them. These adults are often older women who no longer have their own children to look after. This option has been tried on farms and in rural villages where orphans have become a big problem and the traditional leader or farmer has taken responsibility for setting aside a house for this purpose. Just as in foster care, a social worker must write a report after investigating a child's circumstances and make sure that a foster placement is not available first. The social worker must first check which children's home has place for the child.
When you adopt a child it is a formal legal process and the child becomes yours. You have full responsibility for the child and the law treats the child as it would treat your own biological child. There are no special grants for adopted children and they family will only qualify to get the child support grant if they are poor. There is no money involved in an adoption matter. The parent of the child does not have to be paid any money nor does the social worker or the adoptive parent or any court official or any government official.
There are very few orphanages available for the thousands of orphans who need care. Orphanages are a very expensive way of looking after children since the building, staff and services are costly. Orphanages are also not very good for children since they are impersonal and often there is too little contact with adults. Many children are abused by older children in orphanages. Families are the best place for children to grow up. When that is impossible it is better to get one adult to look after a small group of children than to put children in an institution.
In many families, children become the main caregivers for people who are ill with AIDS. Older children also often play the parenting role for younger ones. Home-based care and childcare volunteers should target these children for training and support.
Here are some of the things that should be done:
- Educate children about HIV and AIDS and teach them basic methods for washing and looking after patients.
- Make sure they are in school and are able to survive – get food parcels and clothes to them.
- Help them to get access to grants and to things like parent’s bank accounts.
- Talk to them about their fears and answer their questions.
- Make sure they are registered with Home Affairs and apply for ID books.
- Invite older children to family support group meetings
- Make sure the ill parents make memory boxes and have all their documents, including wills, messages and other information, are in order. Family history and a contingency plan for the children should also be documented. A memory box or book could assist parents to talk to their children about their illness
- Talk about the future and help make arrangements to look after the children after their parent’s death – most children are terrified by the uncertainty of what will happen to them when their parents die.
Some orphanages use a house parent system and instead of one large orphanage, they have a number of smaller houses in one place. Each house will have 5 -10 children with one adult to act as their “parent”.
Remember that most children are cared for by grannies and other older women relatives. They also need emotional support, education and training, access to grants and nutrition. Support groups can also be set up for caregivers.
Children living with HIV and AIDS will have special needs that are different from those of adults. They are not able to get access to services and help themselves in the same way. Usually they depend on their mother or another caregiver. If they are very young, they will not understand the disease and the steps they have to take to stay healthy and to protect other people.
Most children with HIV and AIDS were infected as a result of mother – child transmission and their parents often become ill or die when the children are still very young. While all young orphans from poor families need a lot of different kinds of support, home-based care and childcare volunteers should make especially sure that the medical needs of children with HIV and AIDS are properly addressed.
It is best for children to be looked after by those they know and make them feel safe. If possible, children with HIV and AIDS should be left in the care of their families and relatives. These relatives should be targeted for support. In some areas, there are hospices or homes for children who are ill or dying. Social workers should work with clinics, home–based care and childcare volunteers to identify children who would be better off in hospices.
Children with HIV and AIDS are just as subject to discrimination as adults but are much less able to fend for themselves. It is important that every effort be made, by caregivers, teachers, health care providers, child care committees and community leaders, to educate community members. People must fully understand, for example, that an HIV-positive child cannot spread HIV through sitting next to each other in class or playing together.
Most ill children are too small to care for themselves in any way. The caregiver has to be the main target for support and training to make sure the child receives proper care. Child care committees, local clinics or any person/organisation having contact with caregivers should try and support the caregiver in anyway they can. This could include helping them find a support group, ensuring that they have applied for the right grants or sending them to special training.
Special care considerations for children living with HIV and AIDS
Antiretrovirals for Children
The National ART Guidelines (or “protocol”) issued by the Department of Health in 2004 Children with HIV-AIDS has a set of guidelines for children. All HIV-positive children should be assessed at a clinic or hospital to see if they should begin antiretroviral treatment .
A syrup form of ART is available for children which is easier for them to take than tablets but ensuring compliance can be a major challenge. Children taking antiretrovirals need a lot of support and supervision to make sure they are taking the medicines properly and as often as required.
Children who suffer side effects after first going on antiretrovirals may not wish to continue on the medication. This is where they need an adult to encourage them to continue and/or make sure they return to the clinic on a regular basis (and if the side effects continue). As children grow, the dosage of the medications must be changed and this may need to happen several times per year. This underlines the importance of ensuring that the child gets to the clinic regularly.
Wash your hands before and after changing a nappy. Wear disposable gloves if there is blood in the faeces or urine, and if you have a rash or open cut on your hands. Place disposable nappies in a leak-proof container, such as a plastic bag, and put it in a sealed rubbish bin.
Family-style eating is fine with everyone being served from a common serving dish. A child who is HIV-positive should use the same dishes, glasses, and eating utensils. You do not have to wash dishes and utensils separately. Wash all dishes in hot, soapy water. Clean and sterilize baby bottles as usual. Children who are HIV-positive should only use their own tooth brush and never share it.
Clothes that belong to a child who is HIV-positive can be washed with everyone else's clothes using ordinary washing powder or soap. If, however, the clothing has been soiled by blood, faeces, or vomit, wash items separately using 1/2 cup bleach.
Keep a first aid kid handy. It should include:
a box of disposable latex gloves or plastic bags,
antiseptic or disinfectant,
a bottle of bleach (to be diluted just prior to use at a rate of 1 tablespoon bleach for every litre of water),
disposable paper towels,
sterile gauze for covering large wounds,
medical tape and adhesive bandages, and
a leak-proof plastic bag for waste disposal.
Important facts about HIV and AIDS | Overview of action communities can take | How to run prevention and education programmes and campaigns | How to deliver care for people with HIV and AIDS and their families | Care for children affected by HIV and AIDS | How to set up coordinating structures | How to set up a cross-referral system | Resources | HIV and AIDS and Municipalities
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