Parental concerns on disclosure of HIV status to children living with HIV: children’s perspective

ABSTRACT

Disclosure is an important component of comprehensive management of children living with HIV infection (CLHIV). Many parental concerns are barriers for disclosure in children and only few studies addresses children’s perspective on these concerns. Our study aims to understand children’s perspective on parental concerns for disclosure and assess the knowledge of HIV. A questionnaire-based cross-sectional study involving CLHIV between 10 and 18 years attending HIV clinic in southern India, was conducted. Data were collected by directly interviewing only the children after obtaining consent from parents/caregivers. Initial open-ended questions were asked to assess the disclosure status and only fully disclosed children were included. Out of 362 enrolled eligible children, the prevalence of full and partial disclosure was 36.7% and 24%, respectively. The mean age of disclosure was 10.4 years (SD ± 2.6) and non-parental family members in an informal setting were the most common source of disclosure (38.3%). Forty-six percentages of parents were unaware of their child’s disclosure status. Only 2% had disclosed their status to others who were not part of their care. Among disclosed children, 33.8% became upset or sad upon knowing their status, 12% faced discrimination and 41.4% had complete knowledge about their illness. Though the prevalence of disclosure among CLHIV was high, a majority of them had incomplete knowledge about HIV infection. The parental concerns as reported in literature like the child is too young to disclose, concerns about coping, fear of stigma and discrimination and child disclosing to others were not expressed by children.

KEYWORDS:

• CLHIV
• children’s perspective
• disclosure
• knowledge
• parental concerns

Acknowledgements

We wish to acknowledge National AIDS Control Organisation (NACO) and Karnataka State AIDS Prevention Society (KSAPS), Dr Asha D Benakappa, Director, IGICH for their support to conduct this study. We thank Dr Suresh Shastri, for reviewing the article. We acknowledge the contribution of ART Team at PCOE. We are thankful to the children, parents and institutional caregivers who participated in this study.Dr Sanjeeva G N: Conceptualized and designed the study, analyzed, drafted and interpreted the initial manuscript, and is the guarantor of the manuscript. Pavithra H B: Carried out data collection and initial analyses, drafted and interpreted the initial manuscript. Dr Chaitanya S: Carried out data collection and drafted the initial manuscript. Dr Sunil Kumar D R: reviewed the manuscript. Dr Rewari B B: critically reviewed the manuscript, and approved the final manuscript as submitted.

Disclosure statement

No potential conflict of interest was reported by the authors.