Disadvantage and the experience of treatment for multidrug-resistant tuberculosis (MDR-TB)

Abstract

In the present research, we aimed to demonstrate how exploring patients’ treatment experiences may help decision makers better understand and pay attention to social impacts of health interventions. We take multi-drug-resistant tuberculosis (MDR-TB) as a paradigm case of a disease that disproportionately affects people already living with disadvantage and for which treatment itself is extremely burdensome. We conducted a total of 140 in-depth interviews with 53 patients, 56 health care providers, and 31 community members.We found that the burdens of MDR-TB treatment described by respondents fell into two categories: those related to managing the medications (n=77) and those related to other aspects of completing treatment (n=52). Respondents also identified social support (n=121), access to essential goods and services (n=74), personal motivation (n=52), and patient knowledge about the relationship between treatment completion and potential cure (n=44) as factors that may either lighten treatment burdens and facilitate completion or add to treatment burdens and inhibit completion. When asked specifically about preferences for MDR-TB treatment advances, respondents favored a shorter course of treatment (n=52) and fewer pills (n=51) over fewer side effects (n=18). According a pattern analysis applied across the data using the core dimensions of social justice we found that experiencing the side effects of MDR-TB treatment tends uniformly to erode all three dimensions. Our findings demonstrate how systematic collection of data about patients’ lived experience can inform decision-making regarding the social impacts of health interventions in at-risk community living with a high-burden of disease from the perspective of disadvantage.

Keywords

• Disadvantage
• Social Justice
• Multi-drug Resistant Tuberculosis
• Qualitative Description
• South Africa
• Uganda