Marian Loveday1,2,3, Jennifer Furin4, Sindisiwe Hlangu5, Thabile Mthethwa5, Tasneem Naidoo6. 1. HIV and other Infectious Diseases Research Unit, South African Medical Research Council, 491 Peter Mokaba Ridge Road, Overport, Durban, KwaZulu-Natal, South Africa. marian.loveday@mrc.ac.za. 2. Centre for Health Systems Research & Development, University of the Free State, Bloemfontein, South Africa. marian.loveday@mrc.ac.za. 3. CAPRISA-MRC HIV-TB Pathogenesis and Treatment Research Unit, Doris Duke Medical Research Institute, University of KwaZulu-Natal, Durban, South Africa. marian.loveday@mrc.ac.za. 4. Department of Global Health and Social Medicine, Harvard Medical School, Boston, MA, 02115, USA. 5. HIV and other Infectious Diseases Research Unit, South African Medical Research Council, 491 Peter Mokaba Ridge Road, Overport, Durban, KwaZulu-Natal, South Africa. 6. Department of Health, RK Khan Hospital HAST Unit, Durban, KwaZulu-Natal, South Africa.
Abstract
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.
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.