Seen and Heard: Involving Children in Responses to HIV and AIDS

"For effective HIV prevention, the different realities, constraints and needs facing girls and boys need to be understood and addressed. Girls and boys should be involved both separately and together, using a variety of approaches to encourage their involvement in deciding on priorities for intervention. Yet initiatives for the meaningful involvement of people living with and affected by HIV and AIDS, which it is recognised are vital both in terms of rights and programme effectiveness, rarely involve children and young people..."

This HIV/AIDS communication policy brief from Panos London explores strategies for involving children - including young children - in responses to HIV and AIDS. "Seen and Heard" looks at a range of barriers to children's participation, the challenges of accommodating the distinctive communication styles of children, and promising initiatives to support children's communication and participation. The paper draws on the experiences of people living in communities affected by poverty and HIV and AIDS in challenging policymakers and practitioners to give children the tools and space to participate effectively in decisions that affect their lives. It emphasises the importance of listening to the voices and experiences of children, and recognising their energy and creativity in addressing the lived realities of HIV and AIDS in their households and communities.

Data cited in the document indicate that 1 in 7 people dying of HIV-related illness worldwide is a child under 15. The brief is based on the fact that, in the context of HIV, children have distinct experiences and needs, and require appropriate and accessible information and services.

The "child-to-child" approach, used in more than 80 countries by the 1990s, is built on cultural traditions of mutual help. It regards children as active citizens who can share in decision-making, share childcare responsibilities, and be involved in promoting health and nutrition in their communities and households. On this view, children are people in their own right, actively engaging with their environment and with a distinct set of competencies that need to be accommodated.

To illustrate how this conception might help us define the potential and scope of children's participation in responses to HIV and AIDS, the document includes examples of the involvement of children as young as 6 in designing services, conducting research, taking responsibility for their own healthcare, and so on. They have played roles in a wide range of public and private spheres; for instance, in Zambia, young care workers have promoted community discussions on HIV transmission risks and reducing stigma and discrimination, and in Mozambique, orphan and vulnerable children (OVC) committees have engaged adults with children's needs and views. Intersections between children and the media are highlighted, such as the News Agency for Children's Rights (ANDI) in Brazil, Panos Caribbean's work with child journalists, and Soul Buddyz (the multimedia communication initiative of Soul City in South Africa), which has combined providing information on HIV and AIDS and sexuality through television and radio drama with mobilisation of young people's clubs. "General studies of children's participation have shown that they can make a valuable contribution in all of these contexts..."

Support and funding for organisations led by young people themselves can help them set their own agenda, and develop the negotiation and dialogue skills that are part of engagement in public life. Several formal initiatives are cited here. But, as the author points out, it is important to recognise children and young people's involvement in their own peer networks. Yet "[a]ddressing harmful gender norms among children - a key to successful HIV prevention - demands, just as with adults, participatory education and life skills that allow people to reflect on their own relationships and actions. But it also requires initiatives that address the wider institutional, economic and legal factors that underpin gender norms in society...Again, it is vital to focus on children's realities, and to engage them in designing initiatives to tackle complex social issues like gender inequity."

Although there are distinct settings in which children's participation may be addressed systematically, the author stresses that in everyday contexts many of the issues around children’s participation are less clear-cut. For one thing, adults can feel undermined when children appear to know more about their rights than they do. Also, "[p]eople's understanding of participation varies depending on the context, and it is important to work with communities and families to convince them of the value of children's involvement as well as addressing any harmful attitudes and practices." Furthermore, work with children brings a range of ethical issues to the fore, including child protection, informed consent, the need to make information age-appropriate and accessible, and confidentiality. Finally, there is a risk of making children's participation tokenistic and manipulative, leading to early disillusionment with the possibilities of democratic engagement and change.

Research gaps in children's participation in HIV-related initiatives are outlined next. A review of research and unpublished reports (125 documents published from 2003-2007) found an increasing interest in children's participation, but only six rigorous project evaluations. Some of the specific "domains" where the impact of children's participation could be more systematically evaluated include: on organisational structure and process; on the community or environment; on individual young people; and on programme effectiveness. Panos contends that indicators should capture: the extent and quality of young people's participation throughout a programme's life cycle, the types of responsibility they take on, the number of young people involved, their demographic characteristics, how well they represent the intended audience, and the level of continuity of the process. "Project evaluations should also consider changes in power relations both between adults and children, as well as among children themselves..."

A key determinant of success is whether children's distinct communication styles have been taken into account, since children do not necessarily express themselves in ways that easily fit into conventional adult processes for decision-making. Children need to be able to express themselves in ways that they feel comfortable with and in their own terms - which will vary among those of different ages. This means making activities engaging, reflective of actual experiences, and shaped by a variety of media - drawing, painting, music, dance, photography, storytelling, drama and role-play, games, etc. "Pictures and visual representations of shared decisions and outputs can be useful tools as they help to reduce the degree of adult interpretation that may be found in written reports." Memory books (with photos, personal messages and information about relatives and carers) can be a tool for promoting discussion between children and adults on all aspects of HIV and AIDS. Participatory video is also suggested here as a way to present children and young people's opinions in a way that is less open to interpretation and mediation. When talking about difficult experiences, dolls or puppets, as well as drawings of hypothetical figures, have helped young children communicate.

Panos concludes that meaningful involvement of children in responses to HIV and AIDS requires significant investment of time and resources over the long term.