Listening to youth in WE-ACTx: The challenge of adhering to antiretroviral medication

Background: Non-adherence to antiretroviral therapy (ART) is a substantial challenge in resource-poor settings countries, especially among young persons. Methods: Women's Equity in Access to Care and Treatment (WE-ACTx) provides comprehensive medical and psychosocial care to 301 youth 12-25 years of age. We conducted 4 focus groups and individual psychosocial assessments to better understand the obstacles to adherence to HIV medications among youth in the clinic. Results: WE-ACTx youth include 185 females (61%) and 116 males (31%); median age was 18. Half live with one parent, 11% with siblings and 6% alone; 47% report their mother has died. 11% report sexual abuse. Median age of learning they were HIV + was 11.5 years. In last 6 months 39% moved due to poverty, Only half disclosed their HIV status to someone outside of WE-ACTx. The youth appreciated the doctors, nurses and counselors and the attention they received. They want to come to the clinic less frequently, and they would prefer to see more young people at the clinic. Going to the clinic reminds them of their HIV and makes them sad. Many take medications correctly; some expressed concern about side effects, forgetting their medications, and anger over taking them for the rest of their lives. Boarding school was an impediment to taking ART, because of stigma and lack of disclosure. Conclusion: Listening to the youth's feedback has resulted in adapting the clinic setting and the multidisciplinary staff's approach and increasing the involvement of older youth peers to increase adherence to ART.