Abstract:
In resource-limited settings, beliefs about disclosing a child’s HIV status and the subsequent impacts of disclosure
have not been well studied. We sought to describe how parents and guardians of HIV-infected children
view the impact of disclosing a child’s HIV status, particularly for children’s antiretroviral therapy (ART)
adherence. A qualitative study was conducted using involving focus groups and interviews with parents and
guardians of HIV-infected children receiving ART in western Kenya. Interviews covered multiple aspects of the
experience of having children take medicines. Transcribed interview dialogues were coded for analysis. Data
were collected from 120 parents and guardians caring for children 0–14 years (mean 6.8 years, standard deviation
[SD] 6.4); 118 of 120 had not told the children they had HIV. Children’s caregivers (parents and guardians)
described their views on disclosure to children and to others, including how this information-sharing impacted
pediatric ART adherence, children’s well-being, and their social relationships. Caregivers believed that disclosure
might have benefits such as improved ART adherence, especially for older children, and better engagement
of a helping social network. They also feared, however, that disclosure might have both negative psychological
effects for children and negative social effects for their families, including discrimination. In western Kenya,
caregivers’ views on the risks and benefits to disclosing children’s HIV status emerged a key theme related to a
family’s experience with HIV medications, even for families who had not disclosed the child’s status. Assessing
caregivers’ views of disclosure is important to understanding and monitoring pediatric ART
