Structural and Psychosocial Challenges Among Underserved Patients Receiving Hemodialysis During and Beyond the COVID-19 Pandemic: A Qualitative Study.

Rationale & Objective: Racial and ethnic minority groups in the United States are disproportionately affected by chronic kidney disease and progressive kidney failure and face significantly more socioeconomic and psychosocial challenges. However, how such patients' social environment and stigmatization shape their illness experiences and abilities to cope before and during the coronavirus disease 2019 (COVID-19) pandemic has not been well documented, even as social scientific research predicts these groups' exponential vulnerability. Study Design: Qualitative study using semistructured interviews to elicit individual patient narratives about their personal illness experiences before and during the COVID-19 pandemic, any challenges they faced, and their sources of support. Setting & Participants: Using purposive sampling, we recruited 20 adult patients receiving maintenance hemodialysis from centers affiliated with a safety-net hospital in Boston, Massachusetts. Analytical Approach: Interviews were audiotaped, transcribed, and analyzed using thematic content analysis to identify patients' challenges and supports before and during the pandemic. Results: Of the 20 patients in the study, 9 were women, and 18 self-identified as Black or African American. Three main themes emerged, whereby most patients described: (1) stigma and stigmatization as a central element of their life experience; (2) the pandemic as a difficult experience but not a complete rupture from their prepandemic life; and (3) social networks, particularly family, friends, and religious communities, as sources of support crucial to coping with their debilitating illness. Limitations: Whether the findings apply to other settings is unknown, as participants were recruited from centers in a single safety-net urban hospital setting. Conclusions: Psychosocial and environmental factors, including institutional racism and stigmatization, play significant roles in amplifying the burdens shouldered by racial and ethnic minority individuals with kidney disease who now also face the COVID-19 pandemic that has since turned endemic. The results of this study can inform the development of policy interventions aimed at alleviating tensions and structural conditions that impinge on kidney disease patients' wellbeing and health outcomes. Plain-Language Summary: Members of racial and ethnic minority groups in the United States experience the highest rates of progressive kidney failure and face significantly more socioeconomic and psychosocial challenges. We interviewed 20 patients who receive maintenance hemodialysis treatment from centers affiliated with a safety-net hospital. Patients described stigmatization as a central element of their life experience and the pandemic as a difficult challenge (but not a complete rupture) that added to their struggles with illness-related, race-related, and class-related stigmas. Social networks, particularly family, friends, and religious communities, are key sources of support crucial to coping with illness. Findings from this study can inform health care providers and community workers and guide the development of policy interventions to provide better support for these patients.

Patients' Perspectives on Race and the Use of Race-Based Algorithms in Clinical Decision-Making: a Qualitative Study.

BACKGROUND: Clinical algorithms that incorporate race as a modifying factor to guide clinical decision-making have recently been criticized for propagating racial bias in medicine. Equations used to calculate lung or kidney function are examples of clinical algorithms that have different diagnostic parameters depending on an individual's race. While these clinical measures have multiple implications for clinical care, patients' awareness of and their perspectives on the application of such algorithms are unknown. OBJECTIVE: To examine patients' perspectives on race and the use of race-based algorithms in clinical decision-making. DESIGN: Qualitative study using semi-structured interviews. PARTICIPANTS: Twenty-three adult patients recruited at a safety-net hospital in Boston, MA. APPROACH: Interviews were analyzed using thematic content analysis and modified grounded theory. KEY RESULTS: Among the 23 study participants, 11 were women and 15 self-identified as Black or African American. Three categories of themes emerged: The first theme described definitions and the individual meanings participants ascribed to the term race. The second theme described perspectives on the role and consideration of race in clinical decision-making. Most study participants were unaware that race has been used as a modifying factor in clinical equations and rejected the incorporation of race in these equations. The third theme related to exposure to and experience of racism in healthcare settings. Experiences described by non-White participants ranged from microaggressions to overt acts of racism, including perceived racist encounters with healthcare providers. In addition, patients alluded to a deep mistrust in the healthcare system as a major barrier to equitable care. CONCLUSIONS: Our findings suggest that most patients are unaware of how race has been used to make risk assessments and guide clinical care. Further research on patients' perspectives is needed to inform the development of anti-racist policies and regulatory agendas as we move forward to combat systemic racism in medicine.

Beyond the clinic? Eluding a medical diagnosis of anorexia through narrative.

The persistence and recurrence of anorexia nervosa poses a clinical challenge, and provides support for critiques of oppressive and injurious facets of society inscribed on women's bodies. This essay illustrates how a phenomenological, linguistic anthropological approach fruitfully traverses clinical and cultural perspectives by directing attention beyond the embodied experience of patients diagnosed with anorexia nervosa to those who are not clinically diagnosed. Extending a model of illness and recovery as entailing sufferers' emplotting of past, present, and imagined future selves, I argue that women's accounts of their experiences do not simply reflect lived reality, but actually propel health-relevant states of being by enlivening and creating these realities in the process of their telling. In indexical interaction with public and clinical discourses, narratives' grammar, lexicon, and plot structures modify subjects' experiences and interpretations of the events and feelings recounted. This article builds on the insight that linear narratives of "full recovery" that adopt a clinical and feminist voice can help tellers stay recovered, whereas for those "struggling to recover," a genre of contingent, uncertain, sideshadowing narratives alternatively renders recovery an elusive and ambivalently desired object. This essay then identifies a third narrative genre, eluding a diagnosis, which combines elements of the first two genres to paradoxically keep its teller simultaneously sheltered from, and invisible to the well-meaning clutches of medical care, leaving her suffering, yet free, to starve. This focus on narrative genres illustrates the utility of linguistic analyses for discerning and interpreting distress in subclinical populations.