'If I am playing football, I forget that I have this virus': the challenges and coping strategies of adolescents with perinatally acquired HIV in KwaZulu-Natal, South Africa.

BACKGROUND: Adolescents who have acquired HIV perinatally (ALHIV) face unique challenges in taking lifelong antiretroviral therapy (ART), but little is known about what factors affect their adherence over the course of their lifelong treatment journey. METHODS: We conducted a qualitative study with ALHIV who had periods of poor adherence to ART in KwaZulu-Natal, South Africa using Participant-generated Visual Methodologies (PVM). Participants used photography to represent their perspectives and experiences. RESULTS: 14 individuals participated in the research process. We developed a framework and identified four social domains which combined with the adolescent's own experiences and sense of self to either support or undermine adherence. Periods of non-adherence were reported by all participants. Participants described the importance of supportive relationships and households as well as the benefits of ART as supporting adherence. The fear of inadvertent disclosure of their HIV status and the side-effects of ART were barriers to adherence. Possible interventions to support adolescents in their treatment journey are identified. CONCLUSIONS: Current models of adherence support fail to address the challenges to lifelong therapy ALHIV face. Ongoing education and honest communication with health care providers, interventions that build resilience together with peer support, have the potential to improve adherence in ALHIV.

"I am alive because of her": factors affecting adherence to combination antiretroviral therapy among people living with HIV in KwaZulu-Natal, South Africa.

BACKGROUND: People living with HIV need to take lifelong, combination antiretroviral therapy (cART), but there have been only limited explorations of how factors affecting adherence can change over the course of an individual's lifetime. METHODS: We carried out a qualitative study of men and women living with HIV in KwaZulu, Natal, South Africa who were prescribed cART and who had periods of higher and lower adherence. RESULTS: 18 individuals participated in open-ended interviews. Using a dynamic theory of adherence, we identified factual, relational, and experiential factors that were associated with adherence and non-adherence to cART. Periods of non-adherence were commonly reported. Participants described relationships and experiences as being important influences on their ability to adhere to cART throughout their treatment journeys. CONCLUSIONS: Periods of non-adherence to cART are common. While many cART counseling models are based on conveying facts to people prescribed cART, providing opportunities for supportive relationship where people can process their varied experiences is likely important to maintaining health for people living with HIV.