Understanding Challenges and Perspectives of Parents about HIV Disclosures to their Children and Develop a Structured HIV Disclosure Model for Pediatric Age Group

This study is terminated.

In 2008 an estimated 70,000 children in India were living with HIV, with 21,000 new children are infected each year through mother to child transmission (Singh et al 2008).  Increasing availability of antiretroviral treatment (ART) to HIV infected children in India means that more HIV positive children are surviving into adolescence. The American Academy of Pediatrics recommends disclosure of HIV status to school age children, and disclosure is associated with better trust relationships, adherence to ART, family communication and social support, and future physical and emotional well being for children (Wiener 2007).  However, limited data from India reveals rates of disclosure as low as 14% (Arun et al 2009).  The disclosure process is a challenge for health providers and caregivers in resource- constrained settings like India, where effective guidelines supporting disclosure are lacking.

Furthermore, data on the impact of disclosure and the psychosocial needs of adolescents during this time is very limited.  The post-disclosure period is a crucial time to support adolescents’ safe sexual decision-making and treatment adherence. To design effective interventions to support adolescents post disclosure, we must understand their unique needs, attitudes, and perspectives.

Peer support group based interventions are used increasingly in HIV support worldwide. Peers are more accessible, available, and cost less than other health care providers, and their shared experiences enhance their influence and acceptability (Simoni et al 2011).  HIV positive adolescents who attend peer support groups have decreased worries about their illness and negative perceptions of treatment and are more likely to have undetectable viral loads (Funck-Brentano et al 2005). 

The proposed research will be conducted over four weeks in January 2011 in Pune, India at BJ Medical College/ Sassoon Hospital to elucidate the needs of perinatally infected HIV positive adolescents post-disclosure. Focusing on the experiences of adolescents and the perspectives of their caregivers, primary objectives include:

• To characterize the post-disclosure experiences of adolescents and caregivers 
• To explore the impact of disclosure on relationships (with family and caregivers, peers and friends, romantic partners), self esteem, depression, stress, coping abilities, feelings of shame or guilt, academic performance, views on HIV treatment, treatment adherence, and sexual behaviors, with a focus on the decision-making challenges adolescents face in these spheres
• To identify opportunities to support HIV positive adolescents post-disclosure within the existing health infrastructure at ART clinics, and propose appropriate and feasible interventions for BJ Medical/Sassoon Hospital.