AIDS has a devastating effect not only on those living with the infection, but also on friends, family, the community, and – most profoundly – on children. Children whose parents have HIV/AIDS are more likely to experience problems with depression, anxiety and increased risk for HIV infection. Early intervention is the best hope for averting such crises and helping children on the path to healthy, productive adult lives.

Supporting children affected by AIDS

In this context, a curriculum was developed, called "I am a person who matters: a support group for children whose parents have HIV/AIDS". It is based on a model used for child witnesses of domestic violence and aims to help children affected by HIV/AIDS express feelings, reduce future risks, and channel insights obtained into advocacy work. Through mutual assistance, children come to realise that they are not alone in their situation, receive support and learn skills of helping others and identify alternate coping mechanisms. Although the group was initially developed in the United States, its flexible structure and ease of implementation make it ideal for use in developing countries. Most sessions are easily adaptable to varying settings; the group itself can take place at almost any venue with few or no materials.

Curriculum and format

The programme's curriculum consists of a series of independent units that work together as a whole. The units may be interchanged or combined. If a child comes to only one session or attends intermittently, there is still much benefit to be gained. This flexibility accommodates the needs of families with multiple problems who may not be able to attend every week. The main themes are:  sharing, exploring feelings, creative expression, AIDS education, self-care and advocacy. An important aspect involves relaxation techniques: children learn basic principles of deep breathing and meditation, which can help alleviate symptoms of anxiety and open the door to processing deeper feelings. The central theme of self-care is repeated as the children learn these exercises.

The group format includes an introductory activity, stretching exercises, an educational component, a relaxation exercise, a closing exercise and a snack. In the introductory activity, the children introduce themselves and share a non-threatening personal aspect of their lives. This helps to ground them in the moment, alleviate anxiety, and bond with other children. Stretching exercises are repeated each week; as children learn the exercises they can help new members. The educational component is the central part of the group. Each week a central theme relating to HIV/AIDS is explored. A snack and nutrition discussion solidify the lessons on self-care and health. While income may be a large factor in nutrition, children are taught ways to eat more healthily with the resources they possess. If financially possible, group leaders provide the members with a healthful snack, such as fruit and cheese.

Implementation worldwide

Many countries in the world are currently implementing the group programme. Most are in the beginning stages of adapting the work or are using parts of it to fit in with existing programmes.
In the United States, it has been used with inner-city children in New York, and by various hospices and children's camps throughout the country. In Haiti, a residence for children and families has begun use of the curriculum.
The curriculum is also in wide use in Africa. Several attendees of the 1st National AIDS Conference in Ethiopia have begun using it in their grass-roots HIV/AIDS programmes in Addis Ababa and other towns and villages. In Namibia the programme curriculum or parts of it are used to help volunteers and caregivers cope with their feelings of loss, as well as in educating affected children. In Nigeria, it has been adapted for use with refugees from Sierra Leone and other areas. Aspects are also being implemented in educational programmes for adolescents. In Senegal, an organisation concerned about violence against women uses parts of the curriculum. In South Africa, several NGOs use the curriculum; one is a hospice for children with HIV/AIDS. In Tanzania, the curriculum was adapted for adolescents; in Zimbabwe, aspects of the programme are being used in grass-roots programmes. Other countries include Kenya, Lesotho, Mali, Mozambique, Togo, Uganda and Zambia.

The programme is also used extensively in Asia. In China it is being adapted for an HIV/AIDS programme and in Hong Kong it was used in an innovative education programme about teenage sexuality. An HIV prevention programme in Armenia is using the material as is an educational and resource programme in Malaysia. In the Philippines, portions of the curriculum are being used in educational and therapy programmes for people affected by HIV/AIDS. Other Asian countries using the curriculum include Bangladesh, India, Japan and Thailand.

The curriculum is also being used in Latin America (Bolivia, Haiti and Mexico), Europe (Austria, Germany, the Netherlands, Romania, Switzerland and the United Kingdom) and in  Australia.

"I Am a Person Who Matters: A Support Group for Children Whose Parents Have HIV/AIDS" has been shown to be useful in assisting children with ill parents in different settings around the world.

Copies of the curriculum can be obtained from the author.