On the one hand, he explains, they are cast into the role of caretaker for the sick parent or family member, and sometimes for younger siblings. Yet, as these children take on a level of responsibility unknown to most of their peers, Kamya says, they often engage in self-destructive behavior, such as substance abuse, unsafe sexual practices, truancy and violence.
Kamya describes his work in a recent issue of the Journal of HIV/AIDS Prevention and Education for Adolescents and Children, and in a forthcoming book of essays on AIDS-related issues to be released by GSSW's National Research and Training Center on Social Work and HIV/AIDS.
"They are experiencing their own fears and anxieties, trying to understand what's going on, and they also must carry an added burden of running the household," said Kamya. "On top of it all, well children are usually overlooked, because they don't represent a problem or need in the way infected children do."
Asst. Prof. Hugo Kamya (GSSW).
Since 1991, Kamya has co-coordinated a group treatment program in Cambridge to help such children deal with emotional and safety issues related to their plight. As their sense of isolation lessens, he says, children in the program have shown improvement in academic performance, social competence and social skills. Group-oriented approaches offer a valuable tool for schools and communities to use in providing support to children and families affected by AIDS and HIV, Kamya says.
"It is so important for these kids to know they are not alone, and in this group they have been able to form some critical bonds," said Kamya.
Kamya helped establish the program at a community health agency, to which children are referred by mental health professionals, schools and family members. The program consists of two weekly support groups of eight or nine members each, one for pre- and early adolescents and another for teenagers.
The meetings offer a chance for children to talk about what they are experiencing, Kamya says, and to learn from the group leaders - who are clinicians and health care professionals - more about AIDS and HIV. But Kamya notes that the program also encourages creative skills: Members have used story-telling, narratives, pictures, music, dance and writing techniques as a way of confronting the variety of fears and emotions within themselves.
"The discussions are certainly very important," he said. "But these kids have felt so helpless, so overpowered by their situations and creative activities like these offer a way for them to feel as if they are taking action."
At the outset, Kamya said, most children have tended to be reserved - some did not even want to acknowledge why they were in the group. But they gradually open up and reveal their feelings of betrayal and anger over the "family secret." Disclosure of a family member's HIV status is one of the major issues for the children, Kamya says, who may feel as if they are being stigmatized within the community.
Kamya described the case of a 16-year-old girl in the program whose mother was dying of AIDS, and who was experiencing problems at home and school. At one point, she ran away from home and lived with a friend for two weeks, but continued to attend group sessions.
"'It was the one place,'" Kamya recalled her saying, "'that no one would judge me.'
"We need to understand families' cultural and traditional values, and the impact these have on their coping with AIDS," said Kamya. "That is why we need to build collaborations between the mental health and social service professions, and the schools and communities. We cannot let the families go it alone."
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