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Involving children in HIV/AIDS initiatives

Jun 22, 2009

Seen and heard, a new document from Panos London looks at the experiences of young children with HIV/AIDS and examines issues around children's participation. It explores the need to involve children in decisions that affect their lives, and equip them with appropriate communication tools.

Seen and heard: Involving children in responses to HIV and AIDS

Publisher: Panos London, March 2009

One in seven people dying of HIV-related illness worldwide is a child under 15. In the context of HIV, children have distinct experiences and needs. They have particular treatment needs, and require appropriate and accessible information and services.

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It is now widely recognised that support for children affected by AIDS should be directed to their families and communities, as these are the primary settings where children receive sustained care, often with little external support. However, it is also evident that children may face adverse circumstances, including neglect and abuse, in the very same settings.

Seen and heard looks at the involvement of children, including young children, in responses to HIV and AIDS and examines issues around children's participation.

Children’s equitable involvement in responses to HIV and AIDS is important in a wide range of public and private spheres: in institutions such as schools and local government, in participatory research linked to development of community projects, services and policy, and in child-led associations, clubs and ‘parliaments’.

The paper draws on the experiences of people living in communities affected by poverty and HIV and AIDS, and highlights examples of initiatives that successfully involve children.

Key points

  • The specific needs and communication styles of children of different ages need to be recognised and accommodated in responses to HIV and AIDS.
  • There is a need to build on the documented success in involving children in decisions that affect their lives, to give them the tools and space to participate effectively in responses to HIV and AIDS.
  • The different 'childhoods' and experiences of HIV and AIDS, poverty, and of participation for girls and boys of different ages need to be better understood as the starting point for interventions with children.
  • Efforts to involve children also need to be sensitive to the household and community context, and engage communities in addressing harmful local cultural norms and practices.
  • Child- and youth-led organisations and networks need to be supported, both to further children's ability to secure their rights and to support children's public engagement and social awareness.
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