This article documents the experiences of Black birthworkers supporting pregnant and birthing people and new mamas during the first six months of the COVID-19 pandemic. Building on the methodology and outcomes of Battling Over Birth–a Research Justice project by and for Black women about their experiences of pregnancy and childbirth–the authors utilized a “community-based sheltered-in-place research methodology” to collect the narratives of Black birthworkers, including doulas, certified nurse-midwives (CNMs), homebirth midwives, lactation consultants, community health workers and ob/gyns. The article examines the impact of restrictions put in place by hospitals and clinics, including inadequate or inconsistent care, mandatory testing, separation from newborns, and restrictions on attendance by birth support people, including doulas. Birthworkers shared the innovative approaches that they have devised to continue to offer care and the ways that they have expanded the care they offer to make sure the needs of Black birthing people and new parents are being met during this uncertain time. The article also explores the threats to health, safety, and financial security faced by Black birthworkers as a result of the pandemic, and the overt and subtle forms of racism they had to navigate. Finally, it documents the sources of strength that Black birthworkers have found to sustain them at the frontlines of a maternal health care system in crisis.

Context Spiritual care is integral to quality palliative care. Although chaplains are uniquely trained to provide spiritual care, studies evaluating chaplains’ work in palliative care are scarce. Objectives The goals of this pre-post study, conducted among patients with advanced cancer receiving outpatient palliative care, were to evaluate the feasibility and acceptability of chaplain-delivered spiritual care, utilizing the Spiritual Assessment and Intervention Model (“Spiritual AIM”); and to gather pilot data on Spiritual AIM’s effects on spiritual well-being, religious and cancer-specific coping, and physical and psychological symptoms. Methods Patients with advanced cancer (n=31) who were receiving outpatient palliative care were assigned based on chaplains’ and patients’ outpatient schedules, to one of three professional chaplains for three individual Spiritual AIM sessions, conducted over the course of approximately six to eight weeks. Patients completed the following measures at baseline and post-intervention: Edmonton Symptom Assessment Scale (ESAS), Steinhauser spirituality, Brief Religious Coping (Brief RCOPE), Functional Assessment of Chronic Illness Therapy—Spiritual (FACIT-Sp-12), Mini-Mental Adjustment to Cancer (Mini-MAC), Patient Dignity Inventory, Center for Epidemiological Studies – Depression (CES-D, 10-item), and Spielberger State Anxiety Inventory (STAI-S). Results From baseline to post-Spiritual AIM, significant increases were found on the FACIT-Sp-12 Faith subscale, the Mini-MAC Fighting Spirit subscale, and Mini-MAC Adaptive Coping factor. Two trends were observed, i.e., an increase in Positive religious coping and an increase in Fatalism (a subscale of the Mini-MAC). Conclusion Spiritual AIM, a brief chaplain-led intervention, holds potential to address spiritual needs, as well as religious and general coping in patients with serious illnesses.

In this paper, we develop the concept regimes of patienthood. Regimes of patienthood highlights the micro and macro dimensions of illness, paying close attention to how the interplay between the two creates expectations and points of intervention for people when they are ill. Such expectations may vary across time, place, and social position (e.g., age, class, ethnicity, gender, race, sexuality). Regimes of patienthood are always regimes of power and resistance, where the forms of resistance may vary based on individuals’ intersectional positions. We draw on two cases—a study of 45 mostly white, middle class adults living with autoimmune illnesses and a study of 20 Black women living with advanced cancer—to examine one dimension of regimes of patienthood—control. Although a number of social positions, such as age and race, co-produce illness experiences, we focus on three—class, insurance status, and gender—that are particularly salient in our data in relation to control. Such a move illustrates the theoretical power of regimes of patienthood for science and technology studies (STS).

Population-based genomic screening is at the forefront of a new approach to disease prevention. Yet the lack of diversity in genome wide association studies and ongoing debates about the appropriate use of racial and ethnic categories in genomics raise key questions about the translation of genomic knowledge into clinical practice. This article reports on an ethnographic study of a large pragmatic clinical trial of breast cancer screening called WISDOM (Women Informed to Screen Depending On Measures of Risk). Our ethnography illuminates the challenges of using race or ethnicity as a risk factor in the implementation of precision breast cancer risk assessment. Our analysis provides critical insights into how categories of race, ethnicity and ancestry are being deployed in the production of genomic knowledge and medical practice, and key challenges in the development and implementation of novel Polygenic Risk Scores in the research and clinical applications of this emerging science. Specifically, we show how the conflation of social and biological categories of difference can influence risk prediction for individuals who exist at the boundaries of these categories, affecting the perceptions and practices of scientists, clinicians, and research participants themselves. Our research highlights the potential harms of practicing genomic medicine using under-theorized and ambiguous categories of race, ethnicity, and ancestry, particularly in an adaptive, pragmatic trial where research findings are applied in the clinic as they emerge. We contribute to the expanding literature on categories of difference in post-genomic science by closely examining the implementation of a large breast cancer screening study that aims to personalize breast cancer risk using both common and rare genomic markers.