Chronic disease inequities in the era of self-management

Abstract

Though chronic disease is a major source of morbidity and mortality across demographic groups, it has disproportionately burdened the poor and underprivileged. Critical public health scholars and sociologists have documented at length how social determinants of health converge to drive chronic disease and concentrate its impacts among the most vulnerable. Despite this, policy makers, public health practitioners, and clinicians have largely laid blame with poor lifestyle behaviors, while ignoring the powerful ways social conditions shape and constrain health practices. Most public health and clinical approaches to chronic disease management are rooted in behavior modification and punitive discourse that emphasizes personal and moral responsibility for good health. This discourse portrays chronic disease inequities as the aggregate result of poor decision making and risks reinforcing stigmatizing and prejudiced attitudes towards the poor, people of color, and other populations with comparatively worse health. The overarching purpose of this dissertation is to investigate how patients suffering disproportionately from chronic disease, along with the providers and clinic staff who care for them, experience, interpret, and respond to health inequities. I use the case of diabetes as a lens through which to investigate experiences and interpretations of inequities and discourse surrounding chronic lifestyle diseases more broadly. I marshal qualitative data from semi- structured interviews with low-income diabetic patients and staff from two community health centers, along with field observations of diabetes group education sessions and clinical encounters, to inform the findings in the three discrete empirical articles that constitute this dissertation. In the first article, I focus on experiences of health inequity in the day to day lives of community health center patients with diabetes. The article provides a snapshot of the way a seemingly infinite number of mechanisms stemming from socioeconomic status and systemic racism intersect and multiply to present obstacles to diabetes control. The second article focuses on how low-income diabetes patients interpret and make sense of health inequities. More specifically, I investigate the degree to which they weigh the relative roles of personal and societal responsibility in improving chronic disease outcomes, and the extent to which they internalize moral discourses of healthism. In the third and final article, I examine how community health center staff have responded to narratives about patient empowerment-a recent development in chronic disease care that has been criticized for unfairly shifting the burden of responsibility for public health to individuals. I explore the tensions between the modern, individually oriented concept of patient empowerment and the radical, social justice- oriented concept of empowerment that first helped launch community health centers.--Author's abstract