title: Understanding Specific Contexts of Antiretroviral Therapy Adherence in Rural South Africa: A Thematic Analysis of Digital Stories from a Community with High HIV Prevalence.
abstract: Near-perfect adherence to antiretroviral therapy (ART) is required to achieve the best possible prevention and treatment outcomes. Yet, there have been particular concerns about the challenges of adherence among patients living in resource-limited settings in sub-Saharan Africa. The primary objective of this study was to explore adherence in a low-resourced, rural community of high HIV prevalence in South Africa and to identify specific individual and structural factors that can either challenge or support adherence in this context. We applied digital stories as a qualitative research tool to gain insights into personal contexts of HIV and ART adherence. Through an inductive thematic analysis of twenty story texts, soundtracks and drawings, we explored experiences, understandings, and contexts of the participants and identified potential barriers and facilitators for those on lifelong treatment. We found that many of the stories reflected a growing confidence in the effectiveness of ART, which should be viewed as a key facilitator to successful adherence since this attitude can promote disclosure and boost access to social support. Nevertheless, stories also highlighted the complexity of the issues that individuals and households face as they deal with HIV and ART in this setting and it is clear that an overburdened local healthcare system has often struggled to meet the demands of a rapidly expanding epidemic and to provide the necessary medical and emotional support. Our analysis suggests several opportunities for further research and the design of novel health interventions to support optimal adherence. Firstly, future health promotion campaigns should encourage individuals to test together, or at least accompany each other for testing, to encourage social support from the outset. Additionally, home-based testing and ART club interventions might be recommended to make it easier for individuals to adhere to their treatment regimens and to provide a sense of support and solidarity.
authors.affiliation: Africa Centre for Population Health, University of KwaZulu-Natal, Durban, KwaZulu-Natal, South Africa.|School of Education, University of KwaZulu-Natal, Durban, KwaZulu Natal, South Africa.
authors.forename: Astrid
authors.initials: A
authors.lastname: Treffry-Goatley
authors.affiliation: Africa Centre for Population Health, University of KwaZulu-Natal, Durban, KwaZulu-Natal, South Africa.|Department of Clinical Research, London School of Hygiene and Tropical Medicine, London, United Kingdom.
authors.forename: Richard
authors.initials: R
authors.lastname: Lessells
authors.affiliation: Independent digital storytelling practitioner and researcher, Digital storytelling South Africa, Cape Town, South Africa.
authors.forename: Pam
authors.initials: P
authors.lastname: Sykes
authors.affiliation: Africa Centre for Population Health, University of KwaZulu-Natal, Durban, KwaZulu-Natal, South Africa.|Department of Global Health and Population, Harvard T.H. Chan School of Public Health, Boston, Massachusetts, United States of America.
authors.forename: Till
authors.initials: T
authors.lastname: Bärnighausen
authors.affiliation: Africa Centre for Population Health, University of KwaZulu-Natal, Durban, KwaZulu-Natal, South Africa.|School of Laboratory Medicine and Medical Sciences, College of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.|Honorary, Research Department of Infection, University College London (UCL), London, United Kingdom.|Research Department of Infection, University College London (UCL), London, United Kingdom.
authors.forename: Tulio
authors.initials: T
authors.lastname: de Oliveira
authors.affiliation: School of Education, University of KwaZulu-Natal, Durban, KwaZulu Natal, South Africa.
authors.forename: Relebohile
authors.initials: R
authors.lastname: Moletsane
authors.affiliation: Africa Centre for Population Health, University of KwaZulu-Natal, Durban, KwaZulu-Natal, South Africa.|Anthropology and Health, London School of Hygiene and Tropical Medicine, London, United Kingdom.
authors.forename: Janet
authors.initials: J
authors.lastname: Seeley
mesh_terms: D023241:Antiretroviral Therapy, Highly Active; D003376:Counseling; D015658:HIV Infections / Q000188:drug therapy* / Q000453:epidemiology*; D006801:Humans; D057226:Information Seeking Behavior; D055118:Medication Adherence; D011159:Population Surveillance; D015995:Prevalence; D012424:Rural Population; D012944:Social Support; D013019:South Africa / Q000453:epidemiology