Here are some new articles published in February 2021. These are in addition to the special issue of Critical Public Health, “Beyond Biological Citizenship,” already highlighted for us by Emmanuelle Roth. Enjoy!
Medical disposals and problem solving: About high blood pressure in Morocco
Josiane Carine Tantchou
In this article, I analyze how in basic health-care facilities in Morocco, general practitioners transform patients’ problems into solvable problems, taking into account constraints related to medical standards, financial issues, the organization of the health system, and care. My focus is on hypertension, or high blood pressure. I argue that standards allow the solving of patients’ problems through the production of an entity called high blood pressure. However, the ‘high blood pressure’ enacted is different from the entity defined by standards. Fragments of the latter, borrowed from other contexts, are put to work in Morocco, while the material arrangements needed to enforce and have them work without discontinuities do not exist. This contributes to the production of an entity configured at a moment in time between standards and patients’ lives.
Deconstructing PTSD: Trauma and emotion among Mexican immigrant women (open access)
Jacqueline Kimmell, Emily Mendenhall, Elizabeth A Jacobs
The symptomatology for Post-Traumatic Stress Disorder (PTSD) narrowly focuses on particular diagnostic frames and a single triggering event. Such narrow definitions of trauma and recovery have been heavily critiqued by anthropologists and cultural psychiatrists for overlooking cultural complexity as well as the effects of multiple and overlapping events that may cause someone to become “traumatized” and thereby affect recovery. This article investigates how subjective reporting of traumatic experience in life history narratives relates to depressive and PTSD symptomatology, cultural idioms, and repeated traumatic experiences among low-income Mexican immigrant women in Chicago. We interviewed 121 Mexican immigrant women and collected life history narratives and psychiatric scales for depression and PTSD. Most women spoke of the detrimental effects of repeated traumatic experiences, reported depressive (49%) and PTSD (38%) symptoms, and described these experiences through cultural idioms. These data complicate the PTSD diagnosis as a discrete entity that occurs in relation to a single acute event. Most importantly, these findings reveal the importance of cumulative trauma and cultural idioms for the recognition of suffering and the limitation of diagnostic categories for identifying the needs of those who experience multiple social and psychological stressors.
Cultural explanations of psychotic illness and care-seeking of family caregivers in Java, Indonesia
M. A. Subandi, Ardian Praptomojati, Carla R. Marchira, Mary-Jo DelVecchio Good, Byron J. Good
The cultural understanding of illness among caregivers of first-episode psychotic persons is a crucial issue. Not only does it influence caregivers’ care-seeking behavior and length of time until receiving medical treatment (known as the ‘duration of untreated psychosis’ or DUP), but it also predicts the outcome of the illness. This article aims to explore cultural understanding and care-seeking behavior among caregivers of psychotic patients in Java, Indonesia. Data for this article have been taken from two studies conducted by our research group in Yogyakarta, Indonesia. Methods of data collection include surveys, case studies, ethnographic fieldwork, and in-depth interviews. Results of analyses, within and across studies, indicate that caregivers have employed diverse cultural explanatory models in order to understand psychotic illness. Local cultural beliefs, including possession and forms of black magic, were among the most common initial concepts held by family members in relation to psychosis. This echoes broader cultural beliefs in Java. However, it was not uncommon for caregivers to also understand illness in psychological terms (such as frustration, disappointment, and stress) and attached medical explanations. Caregivers’ understanding of illness also changed over time following the changing course of the illness. Both models of illness and the rapidity of care-seeking are also related to the acuteness of onset. This article concludes that it is important for mental health providers, as well as those designing systems of care, to understand the diversity and changing nature of caregivers’ cultural understanding of psychotic illness.
Research in 2009 showed that hundreds of thousands of Mexican immigrants in the U.S. return to Mexico for healthcare annually. Existing studies on the cross-border healthcare behaviors of this group are dominated by two related questions: 1) Why do Mexican immigrants go to Mexico for care? and 2) What are individual-level predictors of seeking care in Mexico? While this research has identified people’s motivations for crossing the border for care and key characteristics associated with this behavior, it has underemphasized an important feature of cross-border healthcare seeking, namely that some immigrants contemporaneously use healthcare in the U.S. and Mexico. Drawing on qualitative interviews with Mexican immigrants in San Diego, CA, located on the U.S.-Mexico border, I show that for some, seeking care in Mexico is a way to supplement the care they receive in the U.S. In this region, some people combine care in the two countries in attempts to achieve what they believe to be optimal care results. Their cross-border behaviors include seeking care in the U.S. for a health condition and, if dissatisfied, going to Mexico for care; getting care in the U.S for certain health problems and Mexico for others; going to Mexico for specialist care when their U.S. doctors will not refer them to specialists; and going to Mexico for pharmaceuticals their U.S. doctors will not prescribe. For these individuals, proximity to the border changes the meanings and behaviors associated with being a patient, in that it enables them to be more actively engaged in their care. At the same time, findings raise questions about the quality of care that results from mixing care in the two countries. These findings suggest a need to understand cross-border healthcare seeking among some border residents as embedded in a larger repertoire of healthcare practices.
Industry, experts and the role of the ‘invisible college’ in the dissemination of non-invasive prenatal testing in the US
Kelly Holloway, Fiona Alice Miller, Nicole Simms
Enthusiasm for so-called ‘personalized’ or ‘precision’ medicine has encouraged the growth of the molecular diagnostics industry and the proliferation of high-priced proprietary tests that can predict, diagnose or inform the treatment of diverse clinical conditions. Through a case study of non-invasive prenatal testing (NIPT), we explore how the mechanisms governing the development and dissemination of this novel prenatal screening test are most aptly understood as a ‘regulatory regime.’ We describe how private actors tied to the manufacturers of this test form a network of “experts” that contribute to the coordination of this regime by virtue of their efforts to navigate the governance of test adoption and also form spaces in which the standards governing test adoption are developed. We draw attention to private actors in this regime to demonstrate that they are a constitutive element of the public policy system governing biomedical innovation and adoption. Through this case study of NIPT we deepen our previous analysis of the role of consultants in navigating and shaping a regulatory regime (Holloway and Miller, 2020) and offer new insight about how scientists work with consultants to shape a regulatory regime that serves industry interests. Our work indicates that the private actors tied to the manufacturers of NIPT (experts employed by industry to court scientists and lobby payers, scientists collaborating with industry, key opinion leaders involved with clinical practice guidelines, lobbyists and consultants), constitute an ‘invisible college’ that navigates the governance of test adoption. The formations and negotiations over standards for NIPT identified in this paper comprise a new institutional norm: a polycentric regulatory regime permeated by commercial interests. The institutionalization of this regime has implications for accountability, transparency and test quality amidst a proliferation of new proprietary molecular tests.
In the U.S., the weight of LGBTQ people—and sexual minority women in particular—is a key focus for those addressing sexual and gender minority health disparities. Sociomedical stigma related to both fat and sexuality, however, complicates patient-provider perceptions and discussions about weight and health. I analyzed data from interviews with LGBTQ patients, healthcare employees, and observations at a LGBTQ healthcare organization to reveal how weight bias becomes a barrier to care for LBQ cisgender women, transgender men, and nonbinary people assigned female. Understood by patients as similar to “trans broken arm syndrome,”—wherein providers attribute health concerns of trans people to minority gender identities and gender affirming care—patients report “fat broken arm syndrome,” wherein providers are perceived to attribute patient health concerns to weight. Patients interpret weight bias as intersectional stigma—related to multiple marginalized identities and embodiments—that puts their health at risk. Healthcare professionals make sense of risk, however, through competing fat frames. Although patient narratives suggest the promise of utilizing stigma-reduction approaches, many providers—typically those who do not share patient standpoints—emphasize the importance of framing fat as an urgent health risk in order to “do no harm.” This case advances knowledge by demonstrating the relational process through which interventions designed to ameliorate health disparities may inadvertently discourage marginalized, “at-risk” patients from healthcare access and adherence.
The Cultivation of Digital Health Citizenship (open access)
Dimitra Petrakaki, Eva Hilberg, Justin Waring
Contemporary health policy discourse renders individuals responsible for managing their health by means of digital technology. Seeing the digital as productive of citizenship, rather than facilitative of it, this paper unpacks the contested role of technology in acts of digital health citizenship. Drawing on longitudinal data collected in the English healthcare context, this article shows that digital health citizenship is produced through patients’ involvement in the generation of health knowledge, including ‘big’ health data, digital artefacts, experiential knowledge and service feedback. The paper adds to existing literature by disaggregating the contested role of technology in displays of digital health citizenship, showing that digital health technology can give rise to expressions of altruism, belonging, and demands for recognition and change in healthcare, whilst responsibilising citizens for the care of themselves and others. The discussion shows how, rather than merely facilitating the actions of a free and autonomous subject, this citizenship often becomes algorithmically produced (e.g. through nudges) and remains isolated to separate instances of engagement without a long-term orientation. Our study enriches the growing sociological literature on health citizenship by exploring how digital technology produces health citizenship at the intersection of biosociality and technosociality.
Medical sociologists widely conceptualize illegality as a social determinant of health, implicating immigration law but not health care law in immigrant health disparities. Contributing to an emerging literature on legal violence in the context of health care, I explore how the Harris Health System in Houston, Texas legally affects low-income undocumented migrants’ lives as they seek care. Drawing on eleven months of ethnographic and interview research with migrants and volunteers at a community-based organization, I argue that the health care system legally exacerbates migrant vulnerability in particular ways. Clerical staff follow medical protocol to deny migrants care on the basis of legibility (i.e., a photo ID), not legality (i.e., legal status), resulting in two classifications of illegality – what I term legible and illegible illegality. The former keeps migrants visible to the state but offers potential care, and the latter legally relegates migrants to the exploitative conditions of informal home care and/or a protracted state of suffering where, for many, death is the only recourse. This research shows that without substantive health reform, health practitioners – physicians, social workers, clerical staff, and home care workers – play an (in)direct role in shaping and normalizing immigrant health disparities.