Challenges in status disclosure and adherence to antiretroviral therapy in children living with HIV: An observational study.

Background and objectives: The advent of highly active antiretroviral therapy has increased the longevity in children living with HIV (CLHIV), which has brought forth new concerns related to status disclosure and adherence to treatment. Information regarding this is limited in Punjab; hence, this study was done to find the relation of disclosure with sociodemographic factors and the problems faced in adhering to antiretroviral therapy (ART) in this region.

Materials and methods: An observational cross-sectional study was conducted on CLHIVs aged 18 months to 15 years visiting the ART center of a tertiary hospital from June to December 2021. Willing caregivers were approached with semistructured validated pretested questionnaire developed for the study.

Results: Ninety-eight caregivers of CLHIV were interviewed and 25% were found to be aware of their serostatus. Children between 5 and 12 years comprised the largest group (57%) and this was also the statistically significant age group in whom the status was not disclosed. Disclosure was more in children having single parents. The low economic status, rural background, and low education status of the caregivers were inversely related to disclosure. Sixty-five percent of the caregivers believed that the appropriate age for status disclosure should be 14-18 years. Adherence was optimal in 85% CLHIVs and distance was the foremost challenge.

Conclusion: The mean age for disclosure was found to be higher than the World Health Organization guidelines in this study; hence, there is a need to encourage caregivers for timely and systematic disclosure and motivate them for maintaining optimal adherence in CLHIV which is important for the success of ART program.