Health communication, HIV/AIDS, social mobilisation, learning evaluation, capacity building

Alison Dunn presented the key issues on some recent research on HIV and AIDS and very young children that Exchange has been engaged in for the Bernard van Leer Foundation.

Dunn’s presentation highlighted the tendency for programmes to ignore very young children, particularly 0-3 year olds. Such children are particularly vulnerable in HIV and AIDS affected communities, and children’s experiences at a very young age impact significantly on their later lives.

One reason for the gap is that listening to very young children adds another level of complexity to the already difficult issues around HIV and AIDS communication. However one discussion participant quoted child development expert Orla Langsted: “Children are experts in their own lives.” For programmes to intervene appropriately we need to find ways to hear the voices of very young children.

For an overview of the issues and suggestions of ways forward see Exchange Findings 2: HIV/AIDS: What about very young children? The paper includes a list of references to current research on this subject.

Discussion focused on three key questions:

Discussion participants were in broad agreement that very young children need to be heard by people making decisions about their lives. But in order to develop a framework for listening to very young children, specific cultural attitudes to HIV and AIDS, children and notions of childhood need to be taken into account. One participant suggested: “Look at caregivers who are good at communicating with children and learn from them.”

Barriers to listening to very young children include the huge pressures on caregivers, adults’ lack of experience in communicating with very young children, and children’s low self-esteem or inability to understand their situation. Discussion participants emphasised that frameworks are needed in order to listen to very young children: their voices need to interact with the programme’s knowledge about what interventions are likely to work. Would listening to children mean "ice-cream for breakfast, dinner and tea” one participant asked? Lorraine Sherr from UCL replied that it was important to develop appropriate structures that allow children’s voices to be heard, rather than responding to particular “choices” of children.

Some ways forward were also highlighted, drawn from discussion participants’ experiences: children’s participation in defining needs can ease the pressure on caregivers; older children can be encouraged to advocate on behalf of younger children; the International Memory Project holds many lessons that could be applied to communicating appropriately with very young children.

Discussion participants emphasised that there are different models of care ranging from residential institutions to volunteer support within a family’s home. However Dunn’s research shows that a common response is to try and place children in orphanages. Again the issue of cultural context comes to the fore: understanding community and family structures and practices is the best way to ensure programmes promote appropriate support for both caregivers and children.

Identifying the range of caregivers is an essential step: UN figures show that 61% of caregivers for children orphaned by AIDS are grandparents, while siblings make up 4%. Caregivers can be empowered, said discussion participants, when programmes try to understand their motivation and situation: practical work can be done to respond to their needs, including information, training and encouragement towards practical outcomes such as shared childcare.

In order to develop appropriate support, programmes might usefully focus on the actions of care giving, rather than caregivers themselves. Discussion participants noted that this would encourage planning beyond the immediate needs of very young children.

What makes for appropriate intervention was the key issue raised by discussion participants. Intervention in households can be justified in order to uphold children’s rights as set out in the UN Convention on the Rights of the Child. But on the other hand, participants asked, who are we to impose our models and values?

In reality, programmes are already intervening in households. But parents, caregivers and children have personal as well as political rights. For example every parent should have the individual right to decide when and how to tell their children they are HIV positive or have AIDS. The importance of combining existing community experiences and priorities with the knowledge and evidence that development programmes can access was a recurrent theme in the discussion.

“Do no harm” and “be humble” were two phrases that participants used to describe the attitude that programme staff need to have when they intervene in households. Listening to people’s values, experiences and judgements is the only way to understand the culture that programmes are operating in. Observing as well as listening is necessary in order to include very young children in programme planning or design.

Discussion participants also highlighted the need to recognise the diverse character of households and "family" set-ups in places where many parents have died. When very young children experience the death of a parent or both parents the roles of other family members change.

Discussion participants noted that HIV and AIDS bring specific challenges as children experience fear and stigma as well as the illness and death of their parents. There is also a danger of missing the different experiences of girls and boys when talking of young children or particular age groups. A focus on gender is just as important in these early years.