https://orcid.org/0000-0003-0326-707X
Abstract
Although tuberculosis (TB) incidence has significantly declined in high-income, low-incidence (HILI) countries, challenges remain in managing TB in vulnerable populations who may struggle to stay on anti-TB treatment (ATT). Factors associated with non-adherence to ATT are well documented; however, adherence is often narrowly conceived as a fixed binary variable that places emphasis on individual agency and the act of taking medicines, rather than on the demands of being on treatment more broadly. Further, the mechanisms through which documented factors act upon the experience of being on treatment are poorly understood. Adopting a relational approach that emphasizes the embeddedness of individuals within dynamic social, structural, and health systems contexts, this scoping review aims to synthesize qualitative evidence on experiences of being on ATT and mechanisms through which socio-ecological factors influence adherence in HILI countries. Six electronic databases were searched for peer-reviewed literature published in English between January 1990 and May 2020. Additional studies were obtained by searching references of included studies. Narrative synthesis was used to analyze qualitative data extracted from included studies. Of 28 included studies, the majority (86%) reported on health systems factors, followed by personal characteristics (82%), structural influences (61%), social factors (57%), and treatment-related factors (50%). Included studies highlighted three points that underpin a relational approach to ATT behavior: 1) individual motivation and capacity to take ATT is dynamic and intertwined with, rather than separate from, social, health systems, and structural factors; 2) individuals’ pre-existing experiences of health-seeking influence their views on treatment and their ability to commit to long-term regular medicine-taking; and 3) social, cultural, and political contexts play an important role in mediating how specific factors work to support or hinder ATT adherence behavior in different settings. Based on our analysis, we suggest that person-centered clinical management of tuberculosis should 1) acknowledge the ways in which ATT both disrupts and is managed within the everyday lives of individuals with TB; 2) appreciate that individuals' circumstances and the support and resources they can access may change over the course of treatment; and 3) display sensitivity towards context-specific social and cultural norms affecting individual and collective experiences of being on ATT.
Acknowledgments
We are grateful to the wider IMPACT team for their support, in particular to Colin Campbell, Jacqui White, Mike Mandelbaum, Heinke Kunst, and Alison Rodger who contributed through ongoing discussion and comment on earlier iterations of the scoping review methodology and findings.
Disclosure
Dr Aaron S Karat reports grants from National Institute of Health Research (UK), during the conduct of the study; personal fees from The Aurum Institute (South Africa), personal fees, non-financial support from Vital Strategies (Singapore), personal fees from The University of Cape Town (South Africa), personal fees from Center for Health Policies and Studies (Moldova), personal fees, non-financial support from Bill & Melinda Gates Foundation (USA), personal fees, non-financial support from Bloomberg Philanthropies (USA), non-financial support from The Africa Health Research Institute (South Africa), non-financial support from University College London (UK), outside the submitted work. Dr Helen R Stagg reports grants from Medical Research Council, UK, nothing from National Institute for Health Research, UK, during the conduct of the study; received travel expenses from Korean CDC and Johnson and Johnson (makers of Bedaquiline), and from Latvian Society Against Tuberculosis (funding through Otsuka and Johnson and Johnson), outside the submitted work. Ms Marcia Darvell reports grants from NIHR, during the conduct of the study. Professor Robert Horne reports personal fees from Spoonful of Sugar Ltd a UCL business Company, outside the submitted work. Dr Karina Kielmann reports grants from National Institute for Health Research (NIHR) United Kingdom, during the conduct of the study.
The authors report no conflicts of interest in this work.