UC Berkeley

Background

Little data is available on the long-term psychosocial effects of disclosure of HIV status that may occur in late adolescence, even when disclosure is timely. Moreover, few studies have described the post-disclosure psychosocial needs of older adolescents who experience delayed disclosure. This study sought to address existing knowledge gaps in the post-disclosure experiences and psychosocial needs of older adolescents living with HIV (ALWHIV).

Methods

We conducted focus group discussions (FGDs) and in-depth interviews (IDIs) among older perinatally infected adolescents aged 16-19 years We collected socio-demographic data and baseline viral load (copies/ml) results for the preceding six months using interviewer-administered questionnaires and clinical notes abstraction. We analysed data inductively and deductively to identify themes related to the experiences and expectations of adolescents with the disclosure and post-disclosure period.

Results

Adolescents who reported having received timely disclosure expressed that as they grew older, they began to comprehend the lifelong repercussions of an HIV diagnosis and experienced a re-emergence of the negative feelings similar to those experienced during the post-disclosure period. Those who received the knowledge of their HIV status during late adolescence experienced prolonged periods of negative self-perception and anger at not receiving their HIV status earlier. They also expressed a need for more information during the disclosure process on the prevention of onward transmission of the virus, safe conception practices resulting in HIV negative children, and information on how to disclose their HIV status to sexual partners or peers. Anticipated stigma was experienced universally by these older adolescents and was a major barrier towards adherence and coping with an HIV status. Caregivers or siblings with a similar HIV status were a source of social support. Adolescents felt that the support of peers (ALWHIV) helped them to accept their HIV status and to learn how to develop a positive outlook on life.

Conclusion

Provision of psychosocial care in late adolescence during the transition to adult care is critical in ensuring the resolution of re-emergent negative emotions. Comprehensive information on HIV prevention and sexual reproductive health should be a crucial component of post-disclosure care for older adolescents. HIV Disclosure and adolescent transition guidelines should include these components to optimize psychosocial care for older adolescents.