HADITHI: The story of disclosure among adolescents with HIV

Imagine you’re a 14-year-old adolescent, coming to clinic every month to see a clinician and refill medications you take twice a day. Now imagine that you don’t know why you take these medicines, despite taking them for as long as you can remember. You don’t know because your caretaker is too afraid to tell you that you have HIV. This is the story that the team of pediatricians led by Dr. Rachel Vreeman and Prof. Winstone Nyandiko encounter too often. Working with HIV-infected adolescents has many challenges, but the issue of disclosure, or how someone comes to know his or her own HIV status, is at the center of a study that began in late 2012.

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The HADITHI study seeks to better understand issues surrounding disclosure for adolescents and families in our AMPATH clinics. Hadithi  means “story” in Kiswahili. Sometimes, life is better understood with stories. This study hopes to use stories told by Kenyans as tools to help guide adolescents through the disclosure process, the process of understanding their own story. (HADITHI also stands for “Helping AMPATH Disclose Information and Talk about HIV Infection.”) 

Currently HADITHI is set up in eight AMPATH clinics, following almost 300 families with HIV-infected children ages 10-15. At the intervention clinics, the project provides individual disclosure counseling, group counseling for adolescents, and novel disclosure tools. Families are counseled through the process of approaching disclosure with their children. Adolescents meet with counselors to discuss the challenges of learning about one’s HIV status and hear encouraging stories of trying to live positively. During these sessions, participants watch videos created by the HADITHI team, highlighting common questions and issues surrounding disclosure. Once adolescents learn their status, they attend peer support groups, using a curriculum centered on post-disclosure coping and psycho-social support. With the results of the HADITHI study, the hope is to not only improve disclosure counseling in AMPATH clinics but also expand services to more families worldwide struggling with HIV disclosure to children. By guiding families in their communication about HIV, the HADITHI team hopes to support children’s transition to adulthood, to improve their adherence to HIV medicines, and to strengthen their mental health.