Abstract
Background With improving standards of care of children living with HIV (CLHIV), pediatric HIV related mortality rates are declining. New challenges like HIV status disclosure are emerging which need to be addressed to ensure their smooth transition into adulthood. Poor disease disclosure rates are observed in CLHIV globally. Aims This study was done to assess the prevalence of HIV disclosure in North Indian CLHIV, know the perceptions of caregivers regarding disclosure, and evaluate the impact of disclosure on CLHIV. Methods It was a questionnaire based cross-sectional study carried out amongst 144 caregivers of CLHIV aged 6-16 years attending the pediatric HIV clinic of a tertiary care teaching hospital. Results Though the majority (93.8%) caregivers felt that it is important to disclose but only 33% of the children were actually disclosed. Eighty five percent felt that disclosure must be done by one of the family members and correspondingly 73% of the disclosed children were actually disclosed by their parents. Forty seven percent believed that the most appropriate age for disclosure is 10-12 years. The mean age at which disclosure was actually done was 11.06 ± 1.62 years. Comparison of the disclosed and undisclosed CLHIV revealed that the disclosed group had significantly higher age, longer duration of taking ART, and higher proportion of paternal orphans. Age of the CLHIV was the only significant factor for disclosure. Several reasons were cited by the caregivers for nondisclosure. The caregivers observed improved drug adherence in 47.9% of the children following disclosure. Conclusions There is a need to develop region specific pediatric HIV disclosure guidelines keeping in mind the caregivers' perceptions. The guidelines must be age appropriate, systematic, and socioculturally acceptable. The most suitable age for disclosure appears to be 10-12 years. Involvement of caregivers and health care providers in the process is a must.
Highlights
WHO aims to achieve an AIDS FREE generation by the year 2030 and one of the focus groups for interventions is the adolescents living with HIV [1]
Caregivers are often reluctant to disclose the diagnosis of HIV to their children because of concern regarding the child inadvertently revealing the family’s HIV status to others, a perception that the child will not be able to cope with the results, guilt regarding transmission, and belief that
The present study observed that only 33.33% children living with HIV (CLHIV) aged 616 years were aware of their seopositive status
Summary
WHO aims to achieve an AIDS FREE generation by the year 2030 and one of the focus groups for interventions is the adolescents living with HIV [1]. HIV diagnosis is no longer a death sentence because of the positive gains from antiretroviral treatment along with a considerable reduction in the incidence of opportunistic infections in children In spite of these advances, disease status disclosure presents a unique challenge for the health care providers as well as caregivers who find it difficult to carry out, more so with increasing age of the child. In order to improve pediatric HIV disclosure rates in a particular region of the world, there is need to understand the locally prevalent beliefs and perceptions of caregivers regarding same. It was a questionnaire based cross-sectional study carried out amongst 144 caregivers of CLHIV aged 6-16 years attending the pediatric HIV clinic of a tertiary care teaching hospital. Involvement of caregivers and health care providers in the process is a must
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