|Caring with Confidence - Practical information for health workers who prevent and treat HIV infection in children (AHRTAG, 1997, 60 p.)|
|Section 3. Diagnosis, treatment and care|
· It is often better for children who have lost one or both parents because of AIDS to remain in their own community and be cared for by other family or community members.
· Helping families and communities cope with young children who are affected by HIV and AIDS is a key role for health workers.
Children who are not infected with HIV may be affected by HIV and AIDS. Those who have lost their mother, father or both parents have to deal with loss and grief, face stigma and discrimination, and their physical and emotional health may be affected.
It is better in most cases for children to stay in their own community. There have always been orphans in all societies and it is important to investigate locally how a culture responds to orphans. Children may be looked after by grandparents, older siblings, aunts or other relatives.
But in many places, the additional responsibility of taking care of children affected by HIV and AIDS is placing great strain on the extended family and on community resources. Families that are already poor or who have lost income from wages or agriculture because of the death or illness of wage earners are finding it difficult to cope with looking after additional children. Those that have already spent money on treatment and funeral expenses for the parents may be reluctant to take care of children who are left. Toddlers and babies may also be considered to be a burden because they need more care and cannot contribute to family income.
An older brother who is looking after his younger siblings describes what happened to them: 'my aunts and paternal grandmother refused to take care of us. The matter was reported to the police who assessed the situation and gave custody of the children to me.
Households headed by older children are especially vulnerable. Their problems include:
· lack of supervision and care
· stunting and hunger
· educational failure
· lack of adequate medical care
· psychological problems
· disruption of normal childhood and adolescence
· early marriage
· poor housing
· child labour.
Young children looked after by other caregivers, such as grandparents or older siblings may have worse health and nutrition. This is because substitute caregivers may:
· have less knowledge about how to manage childhood illness, about good nutrition or about immunisation
· have less knowledge than mothers about recognition of illness in sick children. Older siblings, aunts or grandparents who are looking after a large number of young children may be unable to pay for food or travel to clinics, or may have insufficient time to care for young children when they are sick
· assume that children whose parents have died are themselves infected with HIV. Because of this, they may be denied health care by health workers, or families may be reluctant to spend time and money on treatment when they are sick.
Households headed by older children are especially vulnerable.
Mark Edwards/Still Pictures
Children who have lost a parent or both parents may be confused and unhappy if they have moved away from their home to live with relatives they do not know well and are separated from their brothers and sisters. A lack of love and care can affect children psychologically. Although children whose parents have died because of AIDS are often described as 'innocent victims', they may be neglected, rejected or stigmatised by others in the community or by those who are now looking after them. These children need emotional and psychological support, and those caring for them need support to enable them to deal with their needs.
What can health workers do?
Health workers in some countries are increasingly having to deal with infants and children with no mother who are cared for by grandparents or older siblings. Health workers need to make sure that these children receive health care for common illnesses in the same way as other children and that they are immunised, and to monitor their nutritional status carefully.
It is important to ensure that grandparents and children who are themselves caring for young children receive education and information about primary health care.
Health and community workers can also ensure that caregivers are provided with information about managing illness and about nutrition that is relevant to their circumstances. They can help caregivers to identify their needs in terms of material and emotional support and help them to obtain assistance.
Practical support from the community or from community care programmes should also be considered to help children affected by AIDS. These children must not be singled out and support should be directed towards families and communities, especially child-headed households.
Working with communities takes time and longer term support is better than intensive short term relief. It is also better to support existing community coping mechanisms. This means finding out what people are already doing and what structures, such as churches and schools, are already there, rather than introducing new initiatives from outside which may not be sustainable.
Identifying the main caregivers and community coping mechanisms is an important first step.
The first step is to identify who the main caregivers are and what infrastructure is available to provide support. Ways to help families and communities to cope could include:
· providing counselling services to counsel the family or caregivers, psychological, spiritual and social support
· providing economic support, or encouraging support from the extended family and other community members
· encouraging greater involvement of men in the care of young children
· mobilising community groups, churches, religious, political and traditional leaders
· arranging for temporary support and care for families during particularly difficult times, for example when a child (or a parent) is very sick
· identifying referral and social services
· supporting measures to reduce stigma and discrimination
· training community volunteers in counselling skills so that they can support families
· regular visits to support home-based care and to monitor how well families are coping.
Strategies and coping mechanisms for child-headed households in particular could include:
· temporary or permanent fostering
· relocation to an adult relative's family
· adult relative moves in with children
· regular supervisory and support visits from family or community members
· material support from relatives
· assistance with care of younger siblings.
Community leaders as well as community and health workers can play an important role in encouraging relatives to fulfil family responsibilities, and in protecting the rights of widows and children to land and inheritance. As one home care volunteer in Zimbabwe noted: 'The late husband's family take everything, but sometimes the community elders intervene'.
Health and community workers can counteract stigma and rejection, by making sure that people understand how HIV is and is not transmitted. The FOCUS visiting programme, described in the box on the following page, not only contributed to the welfare of children but encouraged a more human attitude towards orphans.
Child rights and HIV and AIDS
HIV is a child rights issue.
Although, under the UN Convention on the Rights of the Child, all children have the right to health care, education, social services, protection from discrimination, exploitation and abuse, and to survival and development, children with HIV or affected by AIDS are often denied these.
In most countries, young children who are orphaned have few legal or customary rights to family property or land. Few children have any say in what happens to them. Consideration needs to be given to children's rights in relation to inheritance and to deciding on their future.
Community-based support programmes
In Luwero District, one in five children under the age of 18 years has lost at least one parent. The most important needs are for school fees, food, bedding, clothing, and medical care.
Practical support for orphans and their carers, through AMREF and the Francois-Xavier Bagnoud Association, has included assistance to guardians with developing income-generating activities and support to schools to enable children to attend without paying fees.
The Families, Orphans and Children Under Stress (FOCUS) programme in Mutare, Zimbabwe, is supported by the Family AIDS Caring Trust. The programme supports community-based orphan initiatives in four rural sites in Manicaland, through volunteers from local churches. In most cases the volunteers are women, many of them widows, who are provided with basic training so that they can identify and register orphans in the community.
Orphans in need of assistance are identified, regular visits are made, and material support is provided to enable children to stay in their homes and communities. In the last six months of 1996, the 88 volunteers made nearly 10,000 visits to over 3,000 orphans in 798 families. The most needy are visited the most regularly.
Practical help provided by volunteers has included helping children to rebuild their homes, food, blankets, and primary school fees. Projects have been started in all four sites to encourage self-reliance.
An important aspect has been identifying ways to support orphans that complement existing coping mechanisms, enabling them to be supported within their own communities. Also crucial has been encouraging the more important members of communities to be involved in helping affected families. This has in turn encouraged other members of the community to provide support and has been an important strategy for reducing stigma and community rejection. One family, with an older sister looking after several younger siblings, had been ignored by the community - 'we had no visitors because we are so poor we have nothing to give them' - until community leaders became involved in helping to repair the house. The family now receives support from neighbours.
Another project, the Elim Hospital Community-Based Orphan Support Programme, involved men as volunteers in home care and orphan support to share the burden with women.
Lessons learned from these programmes include:
· the importance of involving all members of the community
· only community-based organisations can implement these programmes
· the community and the catchment area where the programme will operate needs to be defined
· programmes are more likely to succeed if they are based on and develop pre-existing activities
· volunteers are the most important resource and care is needed in selecting, training, supporting and motivating them
· steps in client identification include defining the target group, enumeration, registration and needs assessment.
Problems associated with such programmes include:
· stigma attached to AIDS, so that it remains largely hidden
· the needs of children are often not prioritised because children rarely have a voice
· policy makers often still prioritise resource allocation to institutional responses rather than community-based responses.
Strategies for dealing with children orphaned by HIV and AIDS
The following is a summary of the three approaches that have been most commonly used to support children orphaned by HIV/AIDS:
There are various types of institutional orphanages. These often provide high quality care in terms of material needs such as food or clothing. But they have limited capacity, are often expensive to run and do not meet other needs of children, such as belonging to a community. The institutional approach is generally not recommended because it is too costly and therefore unsustainable, and is generally seen as a temporary and last resort.
Various organisations have reacted to orphans coming to them by providing for their basic needs. Again this approach mostly addresses physical needs. It may also not reach the most needy and encourages dependency.
With this approach, community-based volunteers identify the most needy children within the community and visit them regularly. Material assistance, where it is provided, is channelled through the volunteers. Emphasis is placed on support to encourage self-reliance rather than dependence on ongoing external inputs.
The orphan policy developed by the Department of Social Welfare in Zimbabwe, clearly encourages community-based care as the best and most cost-effective method of caring for orphans, as the following (adapted from the draft Zimbabwean National Orphans Care Policy) illustrates.
Places for provision of child care (in descending order of preference):
1. immediate family
Source: G Foster, FACT.