Moral Distress Under Structural Violence: Clinician Experience in Brazil Caring for Low-Income Families of Children with Severe Disabilities.

Rigorous attention has been paid to moral distress among healthcare professionals, largely in high-income settings. More obscure is the presence and impact of moral distress in contexts of chronic poverty and structural violence. Intercultural ethics research and dialogue can help reveal how the long-term presence of morally distressing conditions might influence the moral experience and agency of healthcare providers. This article discusses mixed-methods research at one nongovernmental social support agency and clinic in Rio de Janeiro, Brazil. Chronic levels of moral distress and perceptions of moral harm among clinicians in this setting were both violent, following Nancy Scheper-Hughes' use of that term, and a source of exceptional and innovative care. Rather than glossing over the moral variables of work in such desperate extremes, ethnography in these settings reveals novel skills and strategies for managing moral distress.

Decolonizing Care at Diagnosis: Culture, History, and Family at an Urban Inter-tribal Clinic.

The decolonization framework in medical anthropology is slowly reframing tropes of cultural competency toward decolonizing health care. For decolonization of health care to occur, both colonial histories and continuing postcolonial inequities must be recognized from the first diagnostic moment. We report on qualitative research into the role of culture, history, and family experience in person-specific reactions to receipt of a diagnosis. A collaborative approach at an urban inter-tribal clinic was used to interview patients with a recent (within six months) diagnosis of diabetes or related condition. Interviews revealed ways that the Relocation Act eventuated in isolation, poverty, and diabetes among now-urban Native Americans. We discuss how patients may or may not have the ability to (re)connect with their heritage and may simultaneously perceive only recent family contexts as influential in their diabetes. We conclude by acknowledging how postcolonial harms are not captured in diagnoses but should not be left out of diagnostic discussions.

Blind spots in telemedicine: a qualitative study of staff workarounds to resolve gaps in diabetes management.

BACKGROUND: Novel telemedicine platforms have expanded access to critical retinal screening into primary care settings. This increased access has contributed to improved retinal screening uptake for diabetic patients, particularly those treated in Federally Qualified Health Centers ('safety net' clinics). The aim of this study was to understand how the implementation of telemedical screening for diabetic retinopathy within primary care settings is improving the delivery of critical preventative services, while also introducing changes into clinic workflows and creating additional tasks and responsibilities within resource-constrained clinics. METHODS: A qualitative approach was employed to track workflows and perspectives from a range of medical personnel involved in the telemedicine platform for diabetic retinopathy screening and subsequent follow-up treatment. Data were collected through semi-structured interviews and participant observation at three geographically-dispersed Federally Qualified Health Centers in California. Qualitative analysis was performed using standard thematic analytic approaches within a qualitative data analysis software program. RESULTS: The introduction of telemedicine platforms, such as diabetic retinopathy screening, into primary care settings is creating additional strain on medical personnel across the diabetes eye care management spectrum. Central issues are related to scheduling patients, issuing referrals for follow-up care and treatment, and challenges to improving adherence to treatment and diabetes management. These issues are overcome in many cases through workarounds, or when medical staff work outside of their job descriptions, purview, and permission to move patients through the diabetes management continuum. CONCLUSIONS: This study demonstrates how the implementation of a novel telemedical platform for diabetic retinopathy screening contributes to the phenomenon of workarounds that account for additional tasks and patient volume. These workarounds should not be considered a sustainable model of health care delivery, but rather as an initial step to understanding where issues are and how clinics can adapt to the inclusion of telemedicine and ultimately increase access to care. The presence of workarounds suggests that as telemedicine is expanded, adequate resources, as well as collaborative, cross-sectoral co-design of new workflows must be simultaneously provided. Systematic bolstering of resources would contribute to more consistent success of telemedicine screening platforms and improved treatment and prevention of disease-related complications.

The traditional food of migrants: Meat, water, and other challenges for dietary advice. An ethnography in Guanajuato, Mexico.

The term "traditional diet" is used variously in public health and nutrition literature to refer to a substantial variety of foodways. Yet it is difficult to draw generalities about dietary tradition for specific ethnic groups. Given the strong association between migration and dietary change, it is particularly important that dietary advice for migrants be both accurate and specific. In this article, I examine the cultural construct of "traditional foods" through mixed method research on diet and foodways among rural farmers in Guanajuato, MX and migrants from this community to other Mexican and U.S. destinations. Findings reveal first, that quantitatively salient terms may contain important variation, and second, that some "traditional" dietary items -like "refresco," "carne," and "agua" - may be used in nutritionally contradictory ways between clinicians and Mexican immigrant patients. Specifically, the term "traditional food" in nutritional advice for Mexican migrants may be intended to promote consumption of fresh produce or less meat; but it may also invoke other foods (e.g., meats or corn), inspire more regular consumption of formerly rare foods (e.g., meats, flavored waters), or set up financially impossible goals (e.g., leaner meats than can be afforded). Salience studies with ethnographic follow up in target populations can promote the most useful and accurate terms for dietary advice.

Independent donor ethical assessment: aiming to standardize donor advocacy.

Living organ donation has become more common across the world. To ensure an informed consent process, given the complex issues involved with organ donation, independent donor advocacy is required. The choice of how donor advocacy is administered is left up to each transplant center. This article presents the experience and process of donor advocacy at University of Texas Southwestern Medical Center administered by a multidisciplinary team consisting of physicians, surgeons, psychologists, medical ethicists and anthropologists, lawyers, a chaplain, a living kidney donor, and a kidney transplant recipient. To ensure that advocacy remains fair and consistent for all donors being considered, the donor advocacy team at University of Texas Southwestern Medical Center developed the Independent Donor Ethical Assessment, a tool that may be useful to others in rendering donor advocacy. In addition, the tool may be modified as circumstances arise to improve donor advocacy and maintain uniformity in decision making.

Ethnography, fidelity, and the evidence that anthropology adds: supplementing the fidelity process in a clinical trial of supported employment.

This discussion considers the role and findings of ethnographic research within a clinical trial of supported employment for veterans with spinal cord injury. Contributing to qualitative evaluation research and to debates over anthropological evidence vis-à-vis clinical trials, we demonstrate how enactors of a randomized controlled trial can simultaneously attend to both the trial's evidentiary and procedural requirements and to the lived experiences and needs of patients and clinicians. Three major findings are described: (1) contextual information essential to fidelity efforts within the trial; (2) the role of human interrelationships and idiosyncratic networks in the trial's success; and (3) a mapping of the power and authority structures relevant to the staff's ability to perform the protocol. We emphasize strengths of anthropological ethnography in clinical trials that include the provision of complementary, qualitative data, the capture of otherwise unmeasured parts of the trial, and the realization of important information for the translation of the clinical findings into new settings.

Teen Perspectives on Suicides and Deaths in an Affluent Community: Perfectionism, Protection, and Exclusion.

Clusters of youth suicide and death are tragic for communities and present long-term consequences for the surviving youths. Despite an awareness of community-based patterns in youth suicide, our understanding of the social and community factors behind these events remains poor. While links between poverty and suicide have been well documented, wealthy communities are rarely targeted in suicide research. In response to this gap, we conducted ethnographic research in a wealthy U.S. town that, over a recent 10-year period, witnessed at least four youth suicides and seven more youth accidental deaths. Our interviews (n = 30) explored community values and stressors, interpersonal relationships, and high school experiences on participant perceptions of community deaths. Youth participants characterize their affluent community as having (1) perfectionist standards; (2) permissive and sometimes absent parents; (3) socially competitive and superficial relationships; and (4) a "bubble" that is protective but also exclusionary. Our qualitative findings reveal network influence in teen suicides and accidental deaths in a wealthy community. Greater attention paid to the negative effects of subcultural values and stressors in affluent communities is warranted. Further, our work promotes the value of ethnographic, community-based methodologies for suicidology and treatment.

Health Literacy, Individual and Community Engagement, and Cardiovascular Risks and Disparities: JACC: CardioOncology State-of-the-Art Review.

Cardiovascular and cancer outcomes intersect within the realm of cardio-oncology survivorship care, marked by disparities across ethnic, racial, social, and geographical landscapes. Although the clinical community is increasingly aware of this complex issue, effective solutions are trailing. To attain substantial public health impact, examinations of cancer types and cardiovascular risk mitigation require complementary approaches that elicit the patient's perspective, scale it to a population level, and focus on actionable population health interventions. Adopting such a multidisciplinary approach will deepen our understanding of patient awareness, motivation, health literacy, and community resources for addressing the unique challenges of cardio-oncology. Geospatial analysis aids in identifying key communities in need within both granular and broader contexts. In this review, we delineate a pathway that navigates barriers from individual to community levels. Data gleaned from these perspectives are critical in informing interventions that empower individuals within diverse communities and improve cardio-oncology survivorship.

A community health worker led diabetes self-management education program: Reducing patient and system burden.

AIMS: Conduct a secondary analysis of the TIME (Telehealth-supported, Integrated Community Health Workers (CHWs), Medication access, diabetes Education) made simple trial (SIMPLE) to evaluate healthcare utilization and explore variables that may have influenced HbA1c. METHODS: Participants (N = 134 [67/group]) were low-income, uninsured Hispanics with or at risk for type 2 diabetes mellitus. We included in-person and telehealth clinician visits, other visits, missed visits, orders placed, and guideline-adherence (e.g., vaccinations, quarterly HbA1c for uncontrolled diabetes). Using multivariable models, we explored for associations between HbA1c changes and these measures. RESULTS: The control arm had higher missed visits rates (intervention: 45 %; control: 56 %; p = 0.007) and missed telehealth appointments (intervention: 10 %; control: 27.4 %; p = 0.04). The intervention group received more COVID vaccinations than the control (p = 0.005). Other health measures were non-significant between groups. Intervention individuals' HbA1c improved with more missed visits (-0.60 %; p < 0.01) and worsened with improved guideline-adherent HbA1c measurements (HbA1c: 1.2 %; p = 0.057). The control group had non-significant HbA1c associations. CONCLUSIONS: Findings suggest that the SIMPLE trial's improved HbA1c levels stemmed from a CHW-driven intervention and not additional healthcare contact. Exploratory outcomes resulted in seemingly counterintuitive HbA1c associations with missed visits and guideline-adherent measurements; these may suggest that an intervention that enhances communication provides support to reduce the amount of follow-up needed by participants without sacrificing clinical improvements.

Redesigning Recruitment and Engagement Strategies for Virtual Culinary Medicine and Medical Nutrition Interventions in a Randomized Trial of Patients with Uncontrolled Type 2 Diabetes.

In-person culinary medicine (CM) can improve health behaviors, but its translation to virtual platforms and impact on diabetes outcomes are not well described. We designed a pragmatic trial comparing the effectiveness of virtual CM (eCM) to Medical Nutrition Therapy on diabetes outcomes among patients with uncontrolled diabetes within a safety-net healthcare system. All participants were provided cooking equipment and food from a food pantry. Due to low initial eCM participation, recruitment was paused, and eight semi-structured interviews were conducted to solicit feedback on study appeal, operations, and barriers to participation. Rapid thematic analysis was used to modify study operations. We found that participants were interested in the study and motivated by health concerns. While they valued food distribution and cooking equipment, they highlighted transportation barriers and conflicts with the pick-up time/location. Some eCM participants expressed discomfort with the virtual platform or preferred to observe rather than cook along. Study operations were modified by (1) moving supply pick-up to a familiar community clinic and diversifying food pick-up locations; (2) offering an in-person orientation to the program to increase comfort with the virtual platform; (3) emphasizing the credibility and relatability of the eCM instructor and encouraging participation of family members. This redesign led to the recruitment of 79 participants, of whom 75% attended at least one class. In conclusion, participant feedback informed pragmatic changes in study operations that increased engagement in this ongoing trial and may inform future eCM program design.

Professional competition amidst intractable maternal mortality: Midwifery in rural Pakistan during the COVID-19 pandemic.

Low-income countries with intransigent maternal mortality rates often follow WHO guidelines that prioritize access to skilled, or professionalized, prenatal and birthing care. Yet the impact of these initiatives in areas still suffering high maternal mortality is opaque. Despite heavy and long investments, the professionalization of midwifery in Pakistan is incomplete, and declines in maternal mortality have plateaued. Traditional midwives have lost status, but they continue to see clients and have influence in their rural communities. We conducted a rapid ethnography among traditional midwives (Dais) and trained Lady Health Workers (LHWs) in two communities of Attock, Pakistan from May to July of 2020. Our findings underscore the importance of long-term presence and trust to maternal care, especially in conditions of resource scarcity or fear (e.g., fear of COVID). We provide evidence of overt disparagement of Dais by LHWs; (2) illustration of the conflicts between gender norms and biomedical priorities of hospitalized births; and (3) exacerbated fear of hospitals during COVID, which served to highlight the advantages of Dai care. Professionalization programs for midwifery must include structures and training to ensure collaborative communications across the country's midwives. Failure to respect the rational decisions of traditional midwives and their patients in circumstances of scarcity, high stress, and isolation only ignores the material and cultural conditions of these vulnerable communities.

Indigenous sovereignty, data sourcing, and knowledge sharing for health.

In this article, we consider the impacts of the COVID-19 pandemic on Indigenous Peoples (IPs) by reporting on information-gathering work across two non-governmental and Indigenous organisations to compensate where federal systems failed. Strategies IPs have employed to understand and respond to the pandemic, and described here, include: collaborative efforts across communities intra- and inter-nationally; open-source data platforms; and small-scale epidemiological research. Our review exposes the informational politics faced by Indigenous organisations and communities, and their struggle to pursue needed resources or protections while avoiding the critiques of 'post-neoliberal' and 'science denialism'. We conclude by suggesting ways that Indigenous communities improve our understanding of their needs during public health crises, and maintain both informational and medical self-governance.

Diabetic Retinopathy and the Cascade into Vision Loss.

Vision loss from diabetic retinopathy should be unnecessary for patients with access to diabetic retinopathy screening, yet it still occurs at high rates and in varied contexts. Precisely because vision loss is only one of many late-stage complications of diabetes, interfering with the management of diabetes and making self-care more difficult, Vision Threatening Diabetic Retinopathy (VTDR) is considered a "high stakes" diagnosis. Our mixed-methods research addressed the contexts of care and treatment seeking in a sample of people with VTDR using safety-net clinic services and eye specialist referrals. We point to conceptual weaknesses in the single disease framework of health care by diagnosis, and we use the framework of "cascades" to clarify why and how certain non-clinical factors come to bear on long-term experiences of complex chronic diseases.

Epidemiological placism in public health emergencies: Ebola in two Dallas neighborhoods.

Super-diverse cities face distinctive challenges during infectious disease outbreaks. For refugee and immigrant groups from epidemic source locations, identities of place blend with epidemiological logics in convoluted ways during these crises. This research investigated the relationships of place and stigma during the Dallas Ebola crisis. Ethnographic results illustrate how Africanness, more than neighborhood stigma, informed Dallas residents' experience of stigma. The problems of place-based stigma, the imprecision of epidemiological placism, and the cohesion of stigma to semiotically powerful levels of place - rather than to realistic risk categories - are discussed. Taking its authority from epidemiology, placism is an important source of potential stigma with critical implications for the success of public health messaging.

An ethnography on perceptions of pain in Dutch "Natural" childbirth.

OBJECTIVE: this study offers insight into how women perceive childbirth pain and how they make decisions about whether to use an epidural during childbirth in the low technology context of the Netherlands maternity care system. DESIGN: ethnographic research consisting of participant observation at births and prenatal and postnatal appointments; semi-structured interviews with a sample of recently post-partum women; coding and triangulation of data to determine key themes in the interviews. SETTING AND PARTICIPANTS: the study was carried out with participants in thirteen urban cities around the Netherlands. The 40 post-partum women had lived in the Netherlands for at least 10 years prior to participation in the study, spoke English proficiently, and had a vaginal birth within the past 18 months. Additionally, participant observation occurred in midwifery practices. FINDINGS: analysis of the interviews revealed three key themes: first, participants perceive childbirth pain as "natural" and positive, and approach its management through non-medical birth methods; second, participants prioritize autonomy in childbirth which they see as something they can "do on [their] own" without pain medication; and third, participants' decisions about using an epidural was supported by professional advice and social connections, such as friends and family members. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: women's conception of pain is central to decisions about childbirth in the Netherlands. This ethnographic research illustrates how perceptions and attitudes toward childbirth pain are affected by definitions of a "natural" birth, women's capacity to give birth, and the presence of professional and social support for non-medical births.

Diagnostic controversy: gestational diabetes and the meaning of risk for pima Indian women.

Gestational diabetes is the one form of this well known, chronic disease of development that disappears. After the birth of the child, the mother's glucose levels typically return to normal. As a harbinger of things to come, gestational diabetes conveys greater risk for later type 2 (previously "non-insulin dependent") diabetes in both the mother and child. Thus, pregnant women have become a central target for prevention of this disease in the entire Pima population. Based on ethnographic interviews conducted between 1999 and 2000, I discuss the negotiated meanings of risk, "borderline" diabetes, and women's personal knowledge and experiences of diabetes, particularly during the highly surveilled period of pregnancy. I also highlight the heterogeneity of professional discourse pertaining to gestational diabetes, most notably the debate surrounding its diagnosis. Significantly, women's narratives reveal the same set of questions as is raised in the professional debate. Implications for diabetes prevention and for balancing the increased surveillance of pregnant women with clinical strategies that privilege their experience and perspectives are also discussed.

Diapers in war zones: ethnomedical factors in acute childhood gastroenteritis in Peshawar, Pakistan.

This article considers ethnomedical knowledge and practices among parents related to contraction of acute gastroenteritis among children in Peshawar, Pakistan. Research methods included analysis of the Emergency Pediatric Services' admission register, a structured interview administered to 47 parents of patients seen in the Khyber Medical College Teaching Hospital, semi-structured interviews of 12 staff, and four home visits among families with children treated at the hospital. The use of native research assistants and participant observation contributed to the reliability of the findings, though the ethnographic, home-visit sample is small. Our research indicated that infection rates are exacerbated in homes through two culturally salient practices and one socioeconomic condition. Various misconceptions propagate the recurrence or perserverance of acute gastroenteritis including assumptions about teething leading to poor knowledge of disease etiology, rehydration solutions leading to increased severity of disease, and diaper usage leading to the spread of disease. In our Discussion, we suggest how hospital structures of authority and gender hierarchy may impact hospital interactions, the flow of information, and its respective importance to the patient's parents leading to possible propagation of disease. These ethnographic data offer a relatively brief but targeted course of action to improve the effectiveness of prevention and treatment efforts.