Modality of Primary HIV Disclosure and Association with Mental Health, Stigma, and Antiretroviral Therapy Adherence in Tanzanian Youth Living with HIV

Julia V. Ramos, BS, Blandina T. Mmbaga, MD, PhD, Elizabeth L. Turner, PhD, Leonia L. Rugalabamu, BA, Severa Luhanga, MPH, Coleen K. Cunningham, MD and Dorothy E. Dow, MD
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Disclosing HIV status to children before adolescence is a major challenge facing families and healthcare providers. This study used a mixed methods approach to explore the youth perspective of how youth living with HIV (YLHIV) found out their status and to quantify the association of disclosure modality with mental health, stigma, adherence, and HIV outcomes in adolescence. Youth 11–24 years of age attending adolescent HIV clinic in Moshi, Tanzania were included. Adolescents answered questions, including when and how they found out they had HIV, mental health surveys (nine-item Patient Health Questionnaire, Strengths and Difficulties Questionnaire, and modified University of California Los Angeles trauma screen), modified Berger's stigma scale, and self-reported adherence. HIV-1 RNA and latest CD4 were obtained. In-depth interviews were conducted using a convenience sample. The majority of youth reported that they found out their HIV status on their own (80%). Youth attending the government site were less likely to be purposefully told their HIV status compared with those attending the referral site (p < 0.01). Depressive and emotional/behavioral symptoms, internal stigma, and incomplete adherence were significantly more likely among those who figured out their HIV status on their own as compared with those who were purposefully told. Youth discussed how they figured out their HIV status on their own during in-depth interviews. These findings demonstrated that youth who figured out their HIV status on their own had increased mental health symptoms and worse adherence to antiretroviral therapy (ART). It is imperative to implement disclosure protocols in early childhood to reduce mental health difficulties, internal stigma, and promote ART adherence in YLHIV.