In the Journals, June 2025
Somatosphere welcomes you to the June edition of “In the Journals.” Scroll through our monthly round up of new research across anthropology, STS and social science journals.
La césarienne dans le monde, à l’intersection entre paysages médicaux globalisés et logiques locales
Globalised caesareans: between medical standardisation and local realities
Sous la direction de Caroline Chautems, Irene Maffi, et Ainhoa Sáenz Morales
La technicisation de la naissance et la logique biomédicale d’anticipation des risques ont conduit à une augmentation globale du recours à la césarienne, entraînant sa « normalisation ». Face à cette tendance, l’Organisation mondiale de la santé préconise de maintenir les taux entre 10 et 15 %, seuil au-delà duquel la morbidité et la mortalité augmenteraient, tant pour les enfants que pour les personnes qui donnent naissance. Le débat sociétal et médical se concentre ainsi souvent sur cette quantification, au détriment d’une analyse des contextes socioculturels, économiques et organisationnels dans lesquels cette pratique s’inscrit.
Ce numéro explore ces dynamiques et met en lumière la diversité des cultures biomédicales coexistant au sein d’un même pays ou territoire, ainsi que les représentations socioculturelles de la césarienne en tant que symbole de progrès médical. Les articles interrogent les trajectoires de soins, les hiérarchisations des voies d’accouchement, et les normes de maternité valorisées. À travers des recherches ethnographiques menées en France, Suisse, Inde, Roumanie et Turquie, ce numéro intègre les perspectives d’une pluralité d’actrices et acteurs (parents, professionnel·le·s de la santé, sages-femmes traditionnelles), révélant les formes d’adhésion, de résistance et d’adaptation face à la césarienne. Il met notamment en lumière des pratiques visant à humaniser la césarienne et à en redéfinir le sens dans les trajectoires de soins reproductifs.
The increasing technicalisation of childbirth and biomedical focus on risk prevention have contributed to an overall increase in the use of caesarean sections, leading to their “normalisation”. While the World Health Organization recommends caesarean rates between 10% and 15% to minimise health risks for both birthing individuals and newborns, public and medical debates have largely focused on quantifying caesarean rates, often at the expense of critically examining the socio-cultural, economic, and healthcare contexts in which these deliveries occur.
This special issue explores the local dynamics shaping caesarean birth across diverse settings, revealing the coexistence of multiple biomedical cultures within a country or region, and the socio-cultural representations of caesarean delivery as a symbol of medical progress. Authors examine how reproductive care trajectories, hierarchies among delivery modes, and norms of “good” motherhood intersect in varied contexts. Drawing on ethnographic research conducted in France, Switzerland, India, Romania, and Turkey, the contributions analyse the uneven use of caesarean sections and incorporate the perspectives of various actors, including parents, healthcare professionals, and traditional midwives. Together, they highlight how caesarean delivery is accepted, negotiated, and adapted – revealing efforts to humanise the procedure and reframe its meaning within reproductive care.
Enhancing caesarean birth experiences while reducing rates: Transdisciplinary perspectives on the introduction of participatory caesareans in French-speaking Switzerland
Caroline Chautems
En Suisse, un accouchement sur trois est une césarienne. Ce taux contraste avec les critiques émises par les organismes de santé publique et certain·e·s praticien·ne·s concernant l’interventionnisme obstétrical, cause de iatrogénie et vécu de manière délétère par les parents. Des hôpitaux suisses ont introduit les césariennes « participatives » dans le but de renforcer l’agentivité des parents, toutefois restreinte par les normes institutionnelles. Fondé sur une ethnographie combinant des observations lors de consultations prénatales dans deux hôpitaux publics et des entretiens approfondis avec des obstétricien·ne·s, des anesthésistes (médecins et infirmièr·e·s) et des sages-femmes, cet article examine la mise en œuvre de la césarienne « participative » dans des maternités suisses romandes et le dialogue transdisciplinaire qu’elle a suscité. S’inscrivant dans la continuité du mouvement pour l’humanisation de la naissance, cette nouvelle modalité de césarienne montre également les continuités et les limites de cette évolution.
In Switzerland, one in three births is by caesarean section. This rate contrasts with the criticisms levelled by public health organisations and some practitioners at obstetric interventionism as a cause of iatrogenic harm and detrimental to parents’ experiences. In response, Swiss hospitals have introduced “participatory” caesarean births to enhance parental agency, which is nevertheless restricted by institutional norms. Drawing on ethnographic research combining observations of prenatal consultations in two public hospitals and in-depth interviews with obstetricians, anesthetists (both physicians and nurses), and midwives, this article examines the implementation of “participatory” caesarean birth in French-speaking Swiss maternity hospitals and the transdisciplinary dialogue they have sparked. As part of the ongoing movement in favour of humanised childbirth, this new approach to cesarean births also highlights both the continuities and the limitations of this evolution.
“If we can spare you a scar […], you give birth like a flower!”: Regulating the use of caesarean sections in a public hospital in contemporary France
Maëlys Bar
En progression constante jusque dans les années 1990, le taux de césarienne se maintient à un niveau stable depuis une vingtaine d’années en France. À partir d’observations menées dans un hôpital public et d’entretiens avec des professionnel·le·s de santé et d’usagèr·e·s ayant accouché par césarienne, cet article propose une piste de compréhension de ce constat en documentant les dispositifs qui gouvernent le recours à la césarienne à l’hôpital. Après avoir évoqué la régulation dont la césarienne fait l’objet dans les protocoles d’accouchement, en accord avec les recommandations sanitaires récentes, il étudie la manière dont les femmes enceintes sont préparées et socialisées aux protocoles dans leurs interactions avec les professionnel·le·s. Le contrôle de l’usage de l’opération, qui hiérarchise médicalement les modes d’accouchement, contribue ainsi à réaffirmer la voie basse comme le mode d’accouchement de première intention et à « normer » socialement la naissance.
The rate of Cesarean sections in France has remained stable over the last twenty years, after a continuous increase until the 1990s. Based on observations made in a public hospital and interviews with health professionals and patients who have given birth by Caesarean section, this article proposes a way of understanding this trend by documenting the mechanisms that govern the use of Caesarean sections in hospitals. After showing how Caesarean sections are regulated in childbirth protocols, in line with recent health recommendations, it examines how pregnant women are prepared for and socialized to the protocols in their interactions with professionals. Controlling the use of the operation, which medically prioritizes modes of delivery, thus contributes to reaffirming vaginal delivery as the mode of first intention, and to the social “normalization” of childbirth.
“After the C-section, you will always have problems”: Hierarchisation of childbirth models in North India
Lucia Gentile
Depuis les années 2000, les programmes gouvernementaux indiens pour l’institutionnalisation des accouchements ont conduit à une médicalisation de la naissance. Parmi les différentes techniques, la césarienne est l’une des plus contestées. L’article s’intéresse à l’impact de ce modèle de naissance sur les représentations et les pratiques des femmes indiennes, en prenant comme cas d’étude la ville de Bhuj, dans l’État du Gujarat. L’enquête ethnographique a souligné la présence d’une hiérarchisation des types d’accouchement et des pratiques d’évitement de la césarienne. Ces dernières sont issues de savoirs locaux diffusés par les dāī, terme vernaculaire désignant celles qui accompagnent les femmes pendant la période périnatale. Se présentant comme les gardiennes de l’accouchement par voie basse, les représentantes de cette profession en voie de disparition ont trouvé, grâce à la césarienne, le moyen de reconstruire leur légitimité dans un environnement désormais dominé par la biomédecine.
Since the 2000s, Indian government programmes aimed at institutionalising childbirth have led to a medicalisation of childbirth. Among the various techniques, caesarean section is one of the most contested outcomes. This article examines the impact of this model of childbirth on the representations and practices of Indian women, with a focus on the town of Bhuj, in the State of Gujarat, as a case study. The ethnographic research revealed a hierarchy of childbirth methods, along with various strategies employed to avoid Caesarean sections. These practices stem from local knowledge disseminated by the dāī, the vernacular term for those who accompany women during the perinatal period. The dāī present themselves as the guardians of vaginal childbirth. Thanks to Caesarean sections, the members of this vanishing profession have found the means to restore their own legitimacy in an environment dominated by biomedicine.
Questioning privilege through childbirth experience of French migrant women in Romania
Eva Renaudeau
Par l’analyse des trajectoires thérapeutiques des migrantes françaises en Roumanie, cet article interroge la notion de privilège à l’aune des rapports sociaux de classe et de genre. Premièrement, l’étude des migrations françaises en Europe met en lumière les disparités entre les ressortissant·es de l’Union européenne et interroge les modalités de la libre circulation. Ensuite, les modes de protection sociale auxquels les Français·es accèdent nous montrent les disparités d’accès aux soins au sein même de la communauté française de Roumanie. Ces conditions matérielles viennent s’articuler avec l’expérience intime de la santé en migration, dévoilent des formes de précarité inhérente à cette expérience et permettent de questionner le privilège de genre et de classe. Enfin, aborder ces questions via l’expérience de l’accouchement nous permet d’aborder plus en détail la dimension genrée de cette expérience.
By analysing the therapeutic trajectories of French migrant women in Romania, this article examines the notion of privilege in the light of class and gender relations. Firstly, studying French migration in Europe sheds light on the disparities between European Union nationals and questions the modalities of free movement. Secondly, the forms of social protection available to French citizens show the disparities in access to healthcare within the French community in Romania. These material conditions are linked to the intimate experience of health in migration revealing the types of vulnerability associated with this experience and raising questions about privilege. Finally, by approaching these questions through the experience of childbirth, this article seeks to analyse in detail the gendered dimension of this experience.
Du projet d’accoucher « naturellement » à l’expérience de la césarienne en urgence
From planning a “natural” birth to the experience of an emergency caesarean section
Ronald Guilloux
Issu d’une enquête de terrain sur des projets de naissance physiologiques portés par des femmes et des sages-femmes dans une maternité de niveau 1 en 2014, cet article vise à comprendre les cas particuliers de trois femmes ayant eu une césarienne (1 siège, 2 dépassements de terme), mais avec des vécus très différents : Catherine ressent une extrême frustration, Edwige relativise l’événement tandis que Jade exprime une immense joie. Une analyse des récits par niveaux d’expérience souligne plusieurs éléments explicatifs : leurs représentations de l’accouchement « naturel » et leurs attentes façonnées au cours de leurs itinéraires procréatifs, les façons dont elles vivent le soutien de l’entourage, ainsi que leur confrontation aux contraintes du fonctionnement hospitalier. Ces éléments peuvent devenir des points de rupture du projet initial et, en fonction de son itinéraire procréatif, chaque femme sera plus ou moins en capacité de rationaliser a posteriori ce changement.
Based on a field survey of physiological birth plans carried out by women and midwives in a level 1 maternity unit in 2014, this article aims to understand the particular cases of three women who had a cesarean section (1 breech, 2 over-term), but with very different experiences: Catherine feels extreme frustration, Edwige relativises the event while Jade expresses immense joy. An analysis of the narratives by level of experience highlights several explanatory elements: their representations of “natural” childbirth and their expectations shaped over the course of their procreative itineraries, the ways in which they experience support from those around them, and their confrontation with the constraints of hospital operations. These elements may represent breaking points in the initial project and, depending on her procreative itinerary, each woman will be more or less able to rationalise this change retrospectively.
Beyond the category of “caesarean on maternal request”. Medical cultures and mothers’ experiences in French-speaking Switzerland
Irene Maffi
Dans cet article, j’explore les logiques socioculturelles et biomédicales au sein desquelles les demandes maternelles de césarienne prennent leur sens et j’analyse la multiplicité des motivations des femmes. Je me propose de complexifier la catégorie médicale de « césarienne sur demande maternelle » qui présuppose un sujet abstrait capable de choix autonomes sans tenir compte du contexte socioculturel et technologique. Le but est d’explorer comment la demande maternelle de césarienne prend forme au sein de normes sociales et biomédicales nouvelles touchant à la naissance, à la féminité et à la maternité. Analysant les récits de quatre mères rencontrées au cours d’une recherche ethnographique en Suisse romande, j’analyserai leurs motivations personnelles et la manière dont elles s’inscrivent dans des dispositifs biomédicaux, des normes sociales et de genre spécifiques. Je mettrai l’accent sur la classe, le niveau d’instruction et l’origine nationale comme éléments importants, tant dans la relation avec les professionnel·le·s de santé que dans la manière d’appréhender le corps féminin et la naissance.
In this article, I examine the socio-cultural and biomedical logics underlying maternal requests for caesarean sections, and analyse the multiplicity of women’s motivations. I aim to add complexity to the medical category of “maternal request”, which presupposes an abstract subject with the capacity to make autonomous choices regardless of the socio-cultural and technological context. The purpose is to explore how maternal demand for a caesarean section arises within new social and biomedical norms relating to birth, femininity and motherhood. Analysing the accounts of four mothers I met during ethnographic research in French-speaking Switzerland, I examine their personal motivations and how they fit into specific biomedical systems and social and gender norms. I focus on class, level of education and national origin as important factors, both in the relationship with health professionals and in the approach to the female body and childbirth.
L’accouchement par césarienne en Turquie : décision médicale ou tendance imposée ?
Caesarean sections in Turkey: a medical decision or an imposed trend?
Selen Göbelez
Le taux d’accouchements par césariennes en Turquie est le plus élevé des pays de l’OCDE : de 21 % en 2002, il est passé à 62,8 % en 2022 (MoH, 2024 : 89). Malgré les mesures de la « loi de la césarienne » de 2012, ce taux n’a pas fléchi. Cet article analyse, sur la base d’une recherche qualitative, les facteurs de cette évolution, en prenant en considération les perspectives des professionnel·le·s de santé et des mères, ainsi que les mesures prises par les autorités sanitaires pour le réduire. La question du choix des femmes concernant la méthode d’accouchement est intriquée dans la trame multidimensionnelle des relations sociales et politiques, tissée notamment par les débats publics, les représentations socio-culturelles de la naissance, le système de santé, la lourde charge de travail des professionnel·le·s ainsi que la recherche du confort organisationnel et l’évitement des risques.
The cesarean section delivery rate in Turkey is currently the highest among OECD member countries, and has increased from 21% in 2002 to 62,8 % in 2022. Despite the introduction of the “Caesarean section law” in 2012, this rate has not declined. Drawing on qualitative research, this article analyzes the factors underlying this trend, taking into account the perspectives of healthcare professional and mothers, as well as political measures taken by health authorities to reduce this rate. The issue of women’s choices of delivery methods is intertwined with the multidimensional network of social and political relations, including public debates, socio-cultural representations of childbirth, the healthcare system, the heavy workload of professionals and the search for organisational comfort and risk avoidance.
Care practices carried out by fathers after a cesarean birth: Between readjustment of gender norms and (re)production of inequalities
Ainhoa Sáenz Morales
Après une césarienne, les mères sont généralement dans l’impossibilité de prendre soin du nouveau-né en raison des protocoles hospitaliers, de leur manque de mobilité, des effets de l’anesthésie et des douleurs postopératoires. Cela positionne le père comme figure de care envers le nouveau-né. Les recherches en sciences sociales sur les expériences des pères lors d’une césarienne restent lacunaires. Pourtant, dans la plupart des pays, dont la Suisse, où une naissance sur trois est une césarienne, ils sont invités par le personnel médical à entrer au bloc opératoire. À partir d’un terrain ethnographique au sein de deux maternités, cet article documente les pratiques de care réalisées par les pères et explore comment l’accomplissement de ces pratiques reconfigure les normes de genre, tout en (re)produisant des inégalités de classe.
After a cesarean, mothers are generally unable to take care of the newborn due to hospital protocols, their lack of mobility, the effects of the anesthesia, and postoperative pain. As a result, the father becomes a figure of care for the newborn. Research in social sciences on fathers’ experiences of caesarean is still scarce, although fathers are invited by medical staff to enter the operating theater in most countries, including Switzerland, where one in three births is a cesarean. Based on ethnographic fieldwork in two maternity units, this article documents the care practices performed by fathers, and explores how these practices reconfigure gender norms and simultaneously (re)produces class inequalities.
Accouchements extra-hospitaliers en Isère : entre juste médicalisation et retour à la nature
Out-of-hospital birthing in Isère: between fair medicalization and back-to-nature longing
Laura Péaud et Irène Favier
L’accouchement à domicile (AAD) reste une pratique marginale en France au regard des 97 % d’accouchements réalisés en structures hospitalières. À partir d’entretiens menés avec 19 femmes (femmes, sages-femmes), cet article donne à entendre les récits en faveur de l’AAD et, plus généralement, de l’accouchement extra-hospitalier – en incluant les maisons de naissance. Le travail a été mené à partir du cas de l’association Bien Naître et Grandir, qui promeut cette pratique sociale autour de Grenoble. Pour la plupart des parturientes interrogées, l’option extra-hospitalière (au domicile ou en maison de naissance) s’inscrit dans une défiance assez systématique vis-à-vis du monde médical – une bonne partie des femmes interrogées faisant ainsi récit d’expériences précédentes peu heureuses. La justification de cette pratique relève aussi d’autres motifs, dont la démédicalisation, la mise en exergue d’une nature partiellement magnifiée ou encore le registre du sacré.
Home birth is still a fringe practice in France, compared with the 97% of births that take place in hospitals. Based on interviews with 19 women (women and midwives), this article looks at the stories behind assisted home birth and, more generally, out-of-hospital birthing options – including birthing centers. The research was based on the case of Bien Naître et Grandir, an association dedicated to promoting this social practice in the Grenoble area. For most of the parturients interviewed, the out-of-hospital choice (at home or in birthing centers) is part of a fairly systematic mistrust of the medical field- with many of the women interviewed recounting previous negative experiences. There are also other reasons for justifying this practice, including demedicalization, the emphasis on a partially magnified nature and the sacred.
From brain “scar” to “bat shit crazy”: negotiating the madness of sexual violence discourse
Emma Yapp
This article analyses how people who identify with psychiatric diagnoses in England and Wales make sense of and talk about their experiences of sexual violence. I examine how interview participants engaged with the hegemonic trauma discourse, as well as the consequences of this for meaning-making, affective pain, and the feminist imperative to ‘speak out’. The hegemonic trauma discourse is characterised by leaving a psychological ‘scar’; is premised on a sudden interruption to a ‘good life’; and is considered pathologically unspeakable without intervention. This discourse was both validating and affectively painful for participants, and interventions targeting dissociation were helpful for assuaging distress. However, it was additionally normative and exclusionary, and did not fulfil the political promise of ‘speaking out’, as all participants faced myriad socio-political denial.
Robbin Jeffries Hein, Martine Lappé, Fionna Francis Fahey
The sciences of environmental epigenetics and the Developmental Origins of Health and Disease have become central in efforts to understand how early life experiences impact health across the life course. This paper draws on interviews with epigenetic scientists and laboratory observations in the United States and Canada to show how scientists conceptualize epigenetic biomarkers as molecular vestiges of early life and the consequences this has for postgenomic approaches to health, risk, and intervention. We argue that this process demarcates early life as the optimal time to study and intervene in health and positions biomarkers as conceptual and methodological tools that scientists mobilize to reimagine early life environments. These environments include Positive Childhood Experiences (PCEs), which reflect an emergent and increasingly prominent epistemic object in behavioral epigenetics. Though distinct from widespread research on Early Life Adversity, we show how PCEs continue to essentialize experience in gendered and individualized ways. Further, this paper suggests that focusing on biomarkers as molecular vestiges of early life allows scientists to create stability despite ongoing epistemological and biological unknowns in epigenetics and DOHaD. Our findings contribute new perspectives to social studies of epigenetics, biomarkers, and the production of novel epistemic objects in postgenomic knowledge practices.
Hilla Nehushtan, Yehuda C. Goodman
This ethnographic project explores how inherent discursive and social tensions are expressed and worked out within obesity care at a weight-loss surgical (WLS) clinic. First, complicated doctor and patient encounters occur because WLS follows a medical logic of intervention and is presented as a “biomagical” procedure that miraculously alters the body. Surgeons, however, explain that the surgery’s success depends on patients’ long and hard work. Second, the clinic’s interdisciplinary approach adds more complexity. While expanding the scope of treatment, it blurs the division of labor among professionals and the distinction between body and mind. It also diffuses the responsibility for patients’ lifestyles and recovery among professionals. Third, alongside notions about patients’ autonomy and free choice, their wishes and bodies are constantly channeled, problematized, and negotiated with various family and peer support. While crucial for the surgery’s success, such interconnectedness raises questions about how decision making and social pressures affect the patients’ journey. Thus, WLS is refracted among webs of multiple actors and contradictory perspectives. This complexity invites a reflection on how such tensions and paradoxes destabilize medical power in modifying the body, challenge personal responsibility assumptions, and impact the quality of care.
Claudio Marciano
Like other technologies, vaccines are socially shaped by socio-economic, political and organisational factors. Property rights, value capture strategies and public innovation policies guide research teams in the biochemical design of vaccines, with inevitable consequences for their price and accessibility. The Covid-19 pandemic provided an opportunity to analyse this institutional shaping process and its consequences for global public health from a political economy perspective. Indeed, the same type of invention, a recombinant protein vaccine, was simultaneously and originally developed in the US and Cuban biopharmaceutical industries and in the field of philanthropic Open Innovation. The article shows, through empirical research that collected direct testimony from scientists and privileged observers of the vaccine development fields, how certain norms and values characteristic of the US industry (financialization, assetization and de-risk) created a path dependency in the use of proprietary and experimental biotechnologies that made the US vaccine Nuvaxovid more expensive and complex to produce, but no more effective and safe than Abdala, Soberana 02 and Corbevax. In addition, the institutional constraints of the US biopharmaceutical industry on radical innovation, even within a mature biotechnology platform such as protein vaccines, would have resulted in a competitive disadvantage for Nuvaxovid, which was as expensive as an mRNA vaccine but less rapid to market and less reliable in delivery. The case of protein vaccines against Covid-19 thus shows how the institutional architectures of techno-scientific capitalism create not only inequalities but also inefficiencies, and that an innovation path with excellent results is possible even in competition where the market is not the dominant order of worth.
Rosie Mathers, Sahra Gibbon, Taylor Riley, Tatiane Muniz
The relative expansion of biosocial research within the life sciences has generated substantial interest from social sciences, with epigenetic science and scientists the primary target of critical commentary. This has led to a narrow perspective on what the biosocial is and how it is being (re)constituted within scientific research, highlighting a need to engage diverse publics in this unfolding terrain of knowledge making. Whilst birth cohorts are often a central resource and primary context for emerging fields of biosocial and epigenetic research, how cohort participants perceive and understand ‘biosocial’ interactions in the context of their lifelong and intergenerational participation is less well known. Drawing on pilot study research with birth cohort participants in the UK and Brazil, we comparatively examine how, in the absence of explicit references to a biosocial exemplar of epigenetics, biosocial dynamics are nonetheless understood by participants in relation to (i) embodied experiences, (ii) intergenerational participation, and (iii) understandings of the knowledge the studies aim to produce. Attending to different understandings of biological and social dynamics in diverse publics helps diversify and broaden the conceptual and methodological tools used to engage in and understand what the biosocial is and how it is coming into being.
Ronja Tammi, Riikka Homanen
Research on reproductive citizenship has focused on prospective or intended parents and how they are (or are not) accorded responsibility, entitlement and support in creating a family. With third-party reproductive arrangements, reproductive tissue donors and surrogates have emerged as new reproductive citizens to be governed in public policy, law and medical practices. In this article, drawing on 23 in-depth interviews of Finnish egg donors, we show how the donors take on roles characterised by contradictory moral responsibilities. The donors both downplay and acknowledge the significance of genetic connection to the donor children. By paying attention to selective reproductive technologies used to screen out gamete donors perceived as unfit to donate, we will discuss egg donation as a form of ableist reproductive-biological citizenship where ‘good’ citizens must know and care not only for their and their offspring’s health but also for the implications of their genome for someone else’s family. However, not all donors align with the ideal type of a good and able reproductive citizen. Some challenge this ideal, crafting reproductive capability and kin relations for third-party reproductive citizens in ways that diverge from the prevailing civic norms.
Making death through producing life: Necrovalue and the political economy of death
Josef Barla
This article explores how advances in synthetic biology and genetic engineering transform the relationship between life and death under contemporary biocapitalism. Discussing two cases of synthetically produced mosquitoes designed to combat vector-borne diseases by targeting their own species, the article contends that these organisms function not only as (lively) commodities but also as metabolically working bodies. These mosquitoes, as the article shows, engage in a specific form of labor, termed ‘metabolic death work,’ which aims at the eradication of fellow members of their species, thereby generating a unique form of value, introduced as ‘necrovalue.’ Complementing the notion of ‘biovalue,’ the concept of necrovalue highlights how death is reimagined as a site of value production in molecular biology and beyond. By applying these concepts to the analysis of the two cases of synthetically produced organisms, this article shows how death enters the realm of the political economy in novel ways as capital gains full control over the metabolic and reproductive capacities of engineered life forms.
Reproducing the normal and the pathological in personalized cancer medicine clinical trials
Nadav Even Chorev, Dani Filc
The medical practice termed Personalized Medicine ideally uses all the patient’s possible characteristics in predicting disease predisposition and response to therapy, but primarily employs the individual’s unique molecular make-up in the tailoring of treatment. This change in medical practice also entails an epistemic shift towards ‘molecularization’: individuals and disease are now understood and governed through life’s basic building blocks. In this paper we argue that underlying personalized medicine is a continued understanding of the pathological state as a quantitative deviation from a normal state. In this we build on the critique of French philosopher Georges Canguilhem who positioned the quantitative interpretation of the pathological in nineteenth century medical thinking. Personalized cancer medicine takes each patient’s cancer as singular, implying that there is no ‘normal’ baseline for comparing individual pathology. We analyze cases of personalized cancer clinical trials from recent years to show that each displays a quantitative understanding of the pathological reminiscent of past thinking in two main modes: a molecularized interpretation of cancer pathology and a quantitative measuring of targeted therapy efficacy. We situate the analysis in broader discussions of historical medical shifts and in current studies of personalized medicine, to outline implications of this form of continuity.
Spectacle: The Semiotics of Albinism in Tanzania
Jane L. Saffitz
In the past fifteen years, scores of high-profile murders of Africans with albinism have sparked a robust global movement for albinism rights. In Tanzania, disparate albinism stakeholders (wadau) attribute violence to an illicit market for albino body parts run by traditional healers and their patrons, who are said to believe in the extraordinary powers of these parts to access an unseen realm. This article tacks between stakeholders with albinism and composite sketches of a healer and her artisanal miner patient, to offer a theory of violence rooted in spectacle rather than belief. Focusing on albinism interventions as sites of spectacle, I employ a semiotics of quality to show how albinism becomes central to broader processes of illumination (kuongeza nuru). A semiotic approach to social movements moves beyond the sedimented categories and narrative tropes that compel activism to reveal a postactivist politics and ethics grounded in relationality.
Muhtasari
Katika kipindi cha takribani miaka kumi na tano iliyopita, matukio mengi ya mauaji ya Waafrika wenye ualbino yamechochea vuguvugu kote duniani la kupigania haki za watu hao. Nchini Tanzania, wadau tofauti tofauti wa ualbino wanahusisha vurugu na soko haramu la viungo vya watu hao linaloendeshwa na waganga wa kienyeji na wateja wao, ambao wanadaiwa kuamini katika uwezo wa ajabu wa viungo hivi kufika kwenye ulimwengu usioonekana. Makala haya yanahusu wadau wenye ualbino na hadithi ya mganga na mgonjwa wake mchimbaji madini mdogo, ili kutoa nadharia ya vurugu iliyojengeka na tamasha lenye mvuto badala ya imani. Nikizingatia kuingilia kati kwa ualbino kama maeneo ya tamasha lenye mvuto, ninatumia semiotiki yenye sifa ilikuonyesha jinsi ualbino unavyokuwa kitovu cha michakato mipana katika kuongeza mwonekano. Mtazamo wa semiotiki wa harakati za kijamii unasogea zaidi ya kategoria zisizo badilika na mambo yote ya kawaida ya kila siku ya kuchochea wadau kwenye kuweka wazi siasa na maadili za wanaharakati zilizojengwa katika mauhusiano.
Janet E. Perkins
Within anthropology, care operates as contested theoretical territory, with much debate residing in the space between what we think care ought to look like in health service delivery settings juxtaposed with what care looks like in the ethnographic encounter. In Bangladesh, public health service providers are often represented as not caring in health encounters. Based on ethnographic data generated in maternal health settings in Kushtia District, this article nuances conceptualizations of care in government health settings, centering the concepts of sheba (service), which is rooted in clinical care, and jotno (care), intimate, hands-on care that constitutes kinship. Through the enactment of embodied performances, government health service providers and staff enact boundary work around sheba and jotno, which serves to constitute the state during and beyond health service encounters, crystallizing within a broader constellation of imaginaries of the state and one’s relationship to it.
সারসংক্ষেপ
নৃবিজ্ঞানের পরিপ্রেক্ষিতে যত্নের ধারণাটি একটি তাত্ত্বিক বিতর্কের ক্ষেত্র- যা মূলত স্বাস্থ্যসেবা প্রদানের ক্ষেত্রে যত্ন কেমন হওয়া উচিত বলে যা আশা করা হয় এবং নৃতাত্ত্বিক নিবিড় গবেষণায় যা দেখা যায় এই দুটোকে পাশাপাশি রেখে বিভিন্ন আলোচনা-সমালোচনাকে কেন্দ্র করে আবর্তিত। বাংলাদেশে জনস্বাস্থ্য পরিষেবা প্রদানকারীদের প্রায়শই স্বাস্থ্যসেবা প্রদানের ক্ষেত্রে ‘যত্নশীল নয়’ হিসেবে উপস্থাপন করা হয়। কুষ্টিয়া জেলায় মাতৃস্বাস্থ্যসেবা নিয়ে পরিচালিত নৃতাত্ত্বিক গবেষণার ভিত্তিতে, এই নিবন্ধটি সরকারি স্বাস্থ্যসেবা ব্যবস্থায় উপস্থিত যত্নের সামগ্রিক ধারণাটিকে সূক্ষ্মভাবে উপস্থাপন করছে মূলত দুটি ধারণাকে পাশাপাশি রেখে: প্রথমটি ‘সেবা’ যা চিকিৎসাকেন্দ্রগুলোর চিকিৎসা বা রোগ উপশমকেন্দ্রিক যত্নের সাথে সম্পর্কিত এবং অন্যটি এমন ধরণের ‘যত্ন’ যা ঘনিষ্ঠতা ও প্রত্যক্ষ সহায়তা সংশ্লিষ্ট যা আত্মীয়তার সম্পর্ককে গঠন করে। সরকারি স্বাস্থ্যসেবা প্রদানকারী ও সাধারণ কর্মীরা তাদের মূর্ত ক্রিয়াকর্মের মাধ্যমে সেবা ও যত্নকে ঘিরে কিছু বিভাজন রেখা তৈরী করেন- এখানে এই বিভাজনক্রিয়াটির মাধ্যমে স্বাস্থ্যসেবা প্রদানকালে এবং এর বাইরে রাষ্ট্র প্রপঞ্চটি গঠিত হয়ে থাকে, যা বৃহত্তর পরিসরে রাষ্ট্র ও ব্যক্তির সাথে রাষ্ট্রের সম্পর্ক নিয়ে কল্পনাসমূহকে ঘিরে পুঞ্জীভূত হয়।
Curare | Zeitschrift für Medizinethnologie | Journal of Medical Anthropology
“Being Cultured”, Changing Culture: Public Health Messaging in COVID-Era Ulaanbaatar
Elizabeth Turk
As poetic and political, images mobilized by public health campaigns are often dense with meaning and associations, even as they make certain assumptions about the good, virtuous, natural, and right. This article explores the assumptions about “being cultured” that underlie the “Let’s Make the City Cultured” campaign and related public health messaging in Ulaanbaatar, Mongolia’s capital city. In the image-slogan complexes mobilized by such campaigns, “being cultured” (soyoltoi), healthy (erüül), and clean (tsever) is linked to curbing specific behaviors such as urinating and spitting in public, which took on new urgency in health-related discourses during the COVID-19 pandemic. As a concept that retains the legacy of meanings and associations in connection with state socialist era values, “being cultured” has been used in different yet connected ways across the 20th and 21st centuries to dis- seminate hegemonic messages. Drawing on the “Let’s Make the City Cultured” and related ideological public health campaigns, this article explores discursive efforts to generate a subject of the state that espouses bourgeois values.
Saskia Jünger, Mariya Lorke
With increasing opportunities of early detection of risk in biomedicine, the communication of statistical likelihood of disease has gained importance. Risk communication is committed to the support of risk literacy, assumed to be a prerequisite for making informed decisions to minimise one’s risk. Graphical representations play a crucial role in this context; among others, stylised human silhouettes are employed to visualise likelihoods, for ex- ample to indicate the number of persons out of one hundred who will or will not get the disease. While this may sup- port risk literacy in terms of more easily ‘grasping’ abstract statistics, still a risk likelihood is difficult to comprehend in terms of its meaning for one’s individual life. So what if this principle is inverted and the stylised human silhouette is used instead to visualise the individual and collective meaning attributed to a certain – actual or envisioned – disease risk? In the context of a study on health literacy among persons with an increased disease risk, we employed body maps in research and in teaching. In the research project, we conducted narrative interviews with 20 persons who had been informed about having an increased risk for familial breast and ovarian cancer or psychosis. Towards the end of each interview, we invited our informants to do a body mapping exercise, using a stylised human silhou- ette on a sheet of paper and asking them to sketch their risk. In teaching, we invited medical students attending an ethics seminar to do a body mapping exercise in small groups based on a case example, using a stylised human silhouette on a flip chart sheet.
Visual Embodiments of Bodily Sensations and Their Individual Conditionality: A Visual Phenomenology
Barbara Graf
This paper gives insight into the exploration of perception, visual representation, and mediation of physical symptoms using methods of artistic research. A crucial question is what experiences and languages can serve to re-present the invisible. The cultural and individual context through which perception is first constituted plays an essential role. Bodily sensations are everyday experiences, but become even more explicit through symptoms of illness. Lived experiences are deeply subjective and require a language in order to be conveyed. This investigation is based on self-experienced incidents caused by multiple sclerosis (MS). Many individuals afflicted with MS experience paresthesia due to a signal-transmission disorder in the central nervous system. The symptoms are not perceived as occurring at the actual location of the damaged nerve cells; in addition, there is no external stimulus associated with the sensations. Such sensations include that of socks covering the feet or balls of textile material underneath the feet. This material is perceived as foreign. These illusions seem perfectly real and are irritating. The process of making bodily phenomena visual is preceded by introspection and leads to externalization, these phenomena ac- quiring, in this process, an additional existence outside the body. The transfer to a sheet of paper can bring relief and help in the process of regaining possession of an alienated body. The drawings are also a means of conveying the invisible to other affected persons, their relatives, and persons in the clinical field. In the process of sensation–perception–representation, a double question arises: What pre-existing images occur during perception and to what extent do the visual representations allow the recipient to begin to comprehend a sensation? Does legibility depend on similarity of experiences and cultural contexts?
Ileana Gabriela Szasz
This account draws on my experience as a practitioner filmmaker documenting my father’s experience of living with dementia. The scope is to analyze how the intimate relationship between me as a filmmaker and the people portrayed in the film shapes the construction of the visual representation of the experience of living with de- mentia. This reflection is placed in the larger frame of the cinematic and media portrayal of mental lines. Visual portrayal of circumstances that involve people struggling with mental disorders, calls for a particular awareness of the responsibility and accountability of documentary filmmakers who assume such endeavors. Personal audio-visual engagements have been viewed as a possible answer to the problem of representation raised by the ethnographic and documentary practice. They are part of a broader ‘social movement that blurs the lines between public and private life’ (Aufderheide 1997). Throughout the process, the filmmaker assumes interchangeable roles of both in- sider and outsider. The subjective position of the filmmaker subverts the aspiration to objectivity, realism, and precision of traditional documentary discourses. Drawing on my experience as a practitioner filmmaker documenting my father’s experience of living with dementia, I discuss the methodological challenges that emerged during the process of film production. What are the cinematic strategies of reinterpretation, reconstruction, and understand- ing of self and otherness? How does such a level of access and intimacy affect the construction of the narrative of living with dementia?
Martina Consoloni, Delia Da Mosto, Margherita Neri, Sara Vallerani
In recent years Graphic Medicine has gained in importance in various fields, ranging from clinical to activist contexts. By analysing the experiences of the Käthe Collective which created the comic book Materia Viva in 2020, the aim of this essay is to review the elaborations that have developed in the field of Graphic Medicine and examine its role during COVID-19. Materia Viva is a comic that focuses on different concepts and principles of health such as: a conceptualisation of health that goes beyond the absence of disease, the social determinants of health, health inequalities, and community participation. Starting from a review of the different uses and purposes of Graphic Medicine, the essay focuses on the context in which Materia Viva was born, namely the lockdowns introduced in response to the COVID-19 pandemic in Italy, and on the creative process that led to the publication of the comic book. Subsequently, the main contents of the comic book are analysed, to conclude with the description of the concrete contexts of Materia Viva’s development and use after its publication. Our analysis highlights how, although Materia Viva was created to disseminate health-related content, it has also been used in other educational, clinical and activist contexts. In this perspective its physical and virtual form, as well as its purpose are shaped by the people who interact with it, resulting in an unexpected relevance compared to the original intentions.
Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine
Kristina A Smith, Kelly P Arbour-Nicitopoulos, Kimberley Widger
Waiting for a child transplant is a form of suffering for parents, yet little research has explored how parents experience waiting and how healthcare providers can impact their waiting experiences. The purpose of this article is to investigate how parents experienced the process of waiting for their child’s transplant with a specific focus on the impact of healthcare providers on parents’ experience of waiting. Six parents from four different families participated in interviews and observations. Our narrative analysis suggested that parents had no narrative roadmap to navigate waiting and the importance of healthcare providers’ tailoring the amount and type of medical information to a parents’ needs. We discuss how waiting required parents to be hypervigilant and provide continuity of care for their child, and how this “managerial role” could lead to a loss of trust with their healthcare providers. Parents’ accounts were replete with contradictions, and as an extension of this, waiting was full of contradictions. Findings contribute to conceptual, methodological, and practical work exploring how parents live in deep uncertainty about the future, and how healthcare providers can support parents in their child’s transplantation and other life-threatening illness contexts.
Lewis Jefferson, Stephen Dunne
This paper examines the rhetorical strategies used by stroke survivors to attend to identity aloneness, a phenomenon in which individuals experience a sense of disconnect from others as a consequence of identity change, for which stroke is known as an antecedent. Three stroke survivors, and their spouses, were interviewed about their stroke, social support, and experiences with loneliness and identity change. The data was transcribed using a simplified version of the Jeffersonian method and analysed using a critical discursive psychological approach. This made it possible to examine the way in which the psychological business of identity aloneness was managed in participants’ talk via discursive devices such as metaphors and category entitlement, while also leaving room to consider how broader societal discourses were drawn upon. The analysis revealed two critical ways in which participants attended to the issue of identity aloneness: (1) by crafting and occupying a position of resilience; (2) by managing the impact of the post-stroke social world on their identities. These findings offer insight into how the issue of identity aloneness is made sense of by stroke survivors in the context of a discussion with an interviewer. Finally, findings informed future directions for research, including developing a comprehensive theory of identity aloneness using a grounded theory approach and developing and validating a psychometric measure of identity aloneness to be applied in a rehabilitative setting.
Conceptualising wellbeing among health-care workers during the Covid-19 pandemic
Judith McHugh, Paul Trotman, Helen D. Nicholson, Kelby Smith-Han
Since 2020 health workers everywhere have been challenged by the ongoing ramifications of the Covid-19 pandemic. This virus impacted all aspects of life but health-related workplaces particularly, were transformed virtually overnight. Demands were heightened and customary supports came under pressure presenting a huge crisis for health systems. The goal of this study was to explore how this catastrophic pandemic event impacted the wellbeing of healthcare professionals (HCPs) working through this time. Interviews with 57 HCPs from multiple countries and specialty areas were explored utilising inductive content analysis (ICA). Resulting data were then categorised into themes and deductively analysed utilising a method informed by Capability Theory. These were secondary data as the interviews were part of a larger set collected primarily for the purpose of a documentary being made about this experience. This study found that illbeing experiences were prevalent among HCPs. However, significant sources of wellbeing were also evident, and were instrumental in maintaining HCP resilience. Wellbeing was enhanced when HCPs experienced a small number of key capabilities that enabled a broad range of functionings. The capabilities were for (a) participation in positive relationships, (b) a sense of identity, purpose, meaning and value in relation to one’s work and (c) ability to provide an appropriate level of medical treatment, care and other role related support. These capabilities were central to HCP wellbeing irrespective of the individual’s location and specialty area, however the ability to realise these capabilities in desired functionings was differentially impacted by each individual’s unique circumstances.
Loss, shame and secrecy in women’s experiences of a vulval skin condition: A qualitative study
Sophie Rees, Susanne Arnold
Vulval lichen sclerosus (LS) is a chronic dermatological condition affecting the anogenital area, causing intense itching, pain and bleeding. It can change the terrain of the vulva, causing loss of vulval anatomy and altered texture and appearance of the skin. There has been little research into how women experience the materialities of a dermatological vulval disease. We aimed to understand experiences of living with LS, using a feminist lens to examine the influence of societal attitudes towards women’s bodies and the vulva. We conducted qualitative interviews with 20 women with vulval LS, taking a critical feminist grounded theory approach. While we found that women’s experiences of vulval LS symptoms was normalised as a part of womanhood, there was a silencing of speech about the vulva generally, and vulval symptoms more specifically. This caused profound shame and loneliness, and was a barrier to disclosing and seeking help for vulval symptoms, leading to delayed diagnosis and disease progression. Loss of vulval architecture resulted in a loss of (feminine) self and the sense of a body which was whole.
The embodied experience of genetic inheritance in hereditary thrombophilia
Edina Tomán, Judit Nóra Pintér, Rita Hargitai
Our study focuses on exploring the embodied experiences of genetic inheritance within and between bodies. Drawing on insights from studies on embodied experiences and family risk we examine how interviewees perceive their vulnerability, negotiate family narratives, genetic inheritance, and the transmission of genetic knowledge within families. To answer these questions, we conducted an interpretative phenomenological analysis, based on 10 in-depth interviews with patients with thrombophilia diagnosis and venous thromboembolic disease, in Hungary. Three Experiential Themes were identified: The body as a repository of risk (1), Family heritage (2), and The borderline of thrombophilia—liminality (3). Our study has found that patients living with thrombophilia interpret their bodies as repositories of genetic risk. It seems that an important aspect of adapting to thrombophilia is the creation of genetically vulnerable identities. Alongside the new identity(ies), living with risk can induce newly discovered forms of familial responsibility, within the common identification experience of family history and succession. Based on our research, we see that individuals living with thrombophilia experience the liminality of borderlands. In some cases, however, the space between health and illness represents a dynamic permeability for people with thrombophilia, which can be triggered by medical uncertainty in addition to individual experiences and life events.
Monica L Molinaro, Jessica Polzer, Debbie Laliberte Rudman, Marie Savundranayagam
Drawing on Arthur Frank’s conceptualization of narrative repair, we consider how pediatric oncology nurses restore and re-story the narratives of patients and families whose biographies have been thrown off course by the diagnosis and death of a child from cancer, as well as their own narratives as caregivers. Frank argued that when one’s life story is shipwrecked by chronic or life-threatening illness, storytelling is way to reorient one’s biography to a new ending, repairing the narrative wreckage created by the illness experience. In this critical narrative study with nine pediatric oncology nurses in Ontario, Canada, we highlight how, through physical, narrative, and moral proximity, nurses become entwined in their patients’ and families’ illness narratives, and how developing this narrative knowledge provides nurses with opportunities to steer families onto new terrain. As well, we examine how nurses re-story and repair their own identities as “good” caregivers in situations when they are prevented from acting on behalf of their pediatric cancer patients. These findings contribute to literature on illness narratives by considering narrative repair as a relational process enacted as part of pediatric oncology caregiving.
Sedated beauty: The invisible knife in online narratives about cosmetic breast augmentation
Petra Roll Bennet
Breast augmentation is a prevalent cosmetic surgery procedure among women in Western societies, and the cosmetic surgery market has witnessed substantial growth. Today, websites and online forums are platforms that feature discussions about cosmetic procedures. A genre on surgery clinic websites is ‘patient stories’, but also lay-initiated internet forums facilitate discussions and shared experiences related to cosmetic surgery. This study aims to analyse lay-initiated online narratives about cosmetic breast augmentation. The shared narratives contain descriptions of how women who are about to undergo breast augmentation prepare for surgery, the medical procedures that take place on the day of surgery itself, and the experiences and feelings after waking up after anaesthesia. Employing a structural analysis of 30 of these stories, this research illuminates how the surgery stories adhere to a conventional storytelling format, and how key characters within the stories are ‘helpers and makers’, including relatives, nurses and surgeons. The focus in these narratives revolves around the woman herself, although her active involvement is primarily observed during the preparation phase, with a more passive role assumed during subsequent clinic routines. Despite instances of pain and discomfort in the narratives, the stories are enveloped in an aura of glamour and a spa-like atmosphere. It is discussed how this ‘fairy tale’ story, narrating a surgical metamorphosis, seems to align with the popularisation of the cosmetic surgery sector.
Line Maria Simonsen, Natasja Eilerskov, Rikke Sand Andersen, Jens Soendergaard, Jesper Bo Nielsen, Dorte Ejg Jarbøl, Trine Thilsing, Kirubakaran Balasubramaniam, Elisabeth Assing Hvidt
In this paper we present findings from a qualitative ethnographic study investigating the experiences and perceptions of general practitioners and other practice staff when introducing a new point of care diagnostic test technology (point of care polymerase chain reaction (POC PCR)) in general practice in Denmark. The ethnographic study was conducted in five general practice clinics, involving observations in four of the clinics and interviews with general practitioners and practice staff in all five clinics. Following an initial analytic phase in which barriers and facilitators in the implementation process of the Point-of-Care test were identified, we developed theoretically informed themes, drawing upon Hartmut Rosa’s social theory of technological acceleration. These themes included ambiguous experiences and perceptions of: (i) diagnostic specification and inflation embedded in diagnostic practices; (ii) empowerment and erosion of professional judgment; (iii) strategies of security and insecurity in communication; (iv) the interdependence between professional autonomy and economic structures associated with organizational power; and (v) subjective and organizational time. We discuss how diagnostic technologies simultaneously contribute to and disrupt treatment safety, efficiency, and medical decision-making. Using Rosa’s sociological concepts of alienation and resonance, this article furthermore explores how these ambiguous dynamics are experienced in general practice settings. It also examines the implications of navigating a heterogeneous socio-technical and medical landscape and what it means to be a health professional in a contemporary general practice environment that is increasingly shaped by diagnostic technologies.
International Journal of Social Psychiatry
Silvia Tempia Valenta, Fabio Porru, Anna Bornioli, Matteo Di Vincenzo, Andrea Fiorillo, Diana De Ronchi, Anna Rita Atti
Background:
Background: Eating disorders (EDs) have traditionally been studied among heterosexual cisgender women, but recent research highlights a higher prevalence in LGBTQIA+ individuals. Aims: This study aims (1) to investigate the association between different groups based on gender identity and sexual orientation (GISO) and experiencing eating symptoms, and (2) to explore the extent to which self-perceived discrimination and adverse conditions explain this association. Conclusion: This study (1) confirms that sexual and gender minorities may be at higher risk for EDs, and (2) suggests that discrimination and adverse conditions may contribute to the higher prevalence of eating symptoms in this population. Additional research is needed to investigate these minority stressors as they may represent targets for effective interventions to prevent eating symptoms in the LGBTQIA+ community.
Kim Jørgensen, Rikke Juhl, Morten Hansen, Birgitte Lerbæk, Jesper Frederiksen, Emma Watson, Merete Bjerrum, Bengt Karlsson
Aims: This paper aims to explore the intricacies of cross-sectoral collaboration in mental health care, focusing on the perspectives of health professionals across various disciplines. It seeks to understand how collaboration can enhance service delivery and patient outcomes while identifying existing challenges. Background: The evolving healthcare landscape emphasizes the importance of integrating services across sectors, particularly in mental health care, to improve continuity and efficiency of care. Design: The study utilizes qualitative methods to investigate health professionals’ experiences with cross-sectoral collaboration in mental health services. Results: Health professionals recognized the potential benefits of cross-sectoral collaboration, such as enhanced service delivery and improved patient outcomes. However, significant barriers were identified, including bureaucratic obstacles, communication gaps, and insufficient organizational support. Conclusion: Cross-sectoral collaboration in mental health care offers significant advantages, but challenges must be addressed to fully realize its potential. Efforts should focus on policy reforms, organizational support, and fostering interdisciplinary communication to improve care delivery.
Gezahegn Eshetu Mamed, Gashaye M Tefera, Mastewal Bitew, Mansoo Yu
Background: Conflict-induced displacement is a greater risk factor for mental health challenges, especially in countries where people have limited access to mental health services. This study examined the prevalence of mental distress, post-traumatic stress disorder (PTSD), and their relationship with key demographic variables and psychological capital among conflict-induced Internally Displaced People (IDP) in the Wag-Hemra Zone, Amhara Region, Ethiopia. Conclusion: The study underlined that mental health efforts should target enhancing psychological capital as the critical element in mitigating the psychological impacts of war and displacement. Training on improving self-efficacy, utilizing the solid spiritual and religious base of the IDP community to raise hope and optimism, and leveraging the communal culture to foster resilience could help reduce mental distress and the effects of PTSD among IDPs in the study area.
Barbara Stacherl, Theresa M Entringer
Background: Receiving a formal diagnosis for a depressive disorder is a prerequisite for getting treatment, yet the illness inherently complicates care-seeking. Thus, understanding the process from depression symptoms to diagnosis is crucial. Aims: This study aims to disentangle (1) risk factors for depression symptoms from (2) facilitators and barriers to receiving a diagnosis after experiencing depression symptoms. Conclusion: Our results replicated previous research on risk factors for depression symptoms. Moreover, some risk factors for experiencing symptoms (female gender, middle age, unemployment, and higher neuroticism) subsequently also facilitated receiving a formal depression diagnosis. Thus, this study underscores the importance of considering the chronological sequence in the process from depression symptoms to diagnosis.
Resilience of young adults in Korea: Navigating the impact of collective trauma and anxiety
Jeesoo Jung, Jiyun Shin, Wonhyung Lee
Background: Amidst increasing occurrences of disasters and traumatic events, there is growing concern about the declining mental health of young adults, who are facing rising societal pressures and uncertainty about their futures. Aims: This study investigates the interplay between collective trauma, anxiety, and resilience among young adults in the Korean context. Based on survey data collected in 2023 from 323 Korean young adults aged 18 to 34 years, a multiple linear regression and independent t-tests were used to examine their experiences of collective trauma, collective anxiety, and resilience, taking gender differences into account. Results: Collective anxiety was associated with resilience, but collective trauma was not. Gender differences were observed: competition- and security-related anxiety, education, and income were positively associated with resilience only for men, while fairness-related anxiety was negatively associated only with women’s resilience. Adaptation-related anxiety was a significant factor for both groups. Conclusion: Certain types of collective anxiety and socioeconomic status may act as protective factors against trauma. Gender should be considered when designing mental health assessments and services for young adults to address the unique needs and challenges in building resilience and managing anxiety.
K Janaki Raman, D Muralidhar, E Aravind Raj, G Venkatasubramanian
Background: Homelessness is a deeply ingrained aspect of our culture. It has a detrimental influence on people of all ages’ physical and mental well-being, child development, academic success and the establishment and upkeep of families. Homelessness and mental illness have a reciprocal relationship that makes them two interrelated social issues that affect people’s ability to function and communities all over the world. Conclusion: Psychosocial intervention plays an essential role in enhancing functionality among homeless persons with mental illness in terms of self-help skills, social skills development, casework, group work, working with family and community and networking with community-based organisations to develop a support system. The present study revealed a significant negative correlation between disability and income.
Medical Anthropology Quarterly
Adeola Oni‐Orisan, Sheyda M. Aboii, and Ugo Felicia Edu
Despite the transformative contributions of Black feminist thought, medical anthropology often fails to recognize or center the works of Black feminist thinkers. We argue that Black feminist theory is critical for a study and praxis of new approaches to healing, health, medicine, illness, disability, and care. We can’t continue to simply recognize that current systems are failing us; Black feminist theory moves us past recognition toward transformative liberation. This special issue emerges from works and conversations leading up to, during, and after the first Black Feminist Health Science Studies Collaboratory, held virtually in May 2021. Through the Collaboratory, we propose a new form of coming together around the sharing of knowledge and practice based in Black feminist thought and Black feminist healing arts. The collection of works that follow demonstrates and provides practical means toward a more liberatory practice of medical anthropology.
Dina Michael Asfaha
This article examines how Eritrea’s realization of Millennium Development Goal 5 (the reduction of maternal mortality) reveals the complex workings of medical sovereignty in sub‐Saharan Africa. Through the case study of Eritrea, I demonstrate how postcolonial African countries might approach structuring their healthcare systems to navigate—and challenge—the neoliberal contours of global health humanitarianism. By analyzing both Eritrea’s colonial history and the liberation‐era history of medicine alongside contemporary healthcare policymaking, I trace how racial and gender dynamics shape the reduction of maternal mortality and the pursuit of medical sovereignty more broadly. To engage in this pursuit, African states must negotiate the tensions between autonomous healthcare development and the political constraints of global health humanitarianism.
Maryani Palupy Rasidjan
In the context of a steadily decreasing Indigenous population, active military occupation, and a documented history of human rights abuses perpetrated by Indonesian state security forces, Black Indigenous Papuans have uttered phrases like extinction, and we will be gone in public and private spaces. These utterances often follow an indictment of Indonesia’s national family planning program as a key node of state apparatuses of domination and, by extension, genocide. Amid Indonesia’s global health success story of a historically lauded national family planning model, I examine the emergence of a local pronatalist program in which health workers are both providers and deniers of access to birth control. Through highlighting this story of Indigenous refusal and racial survival in the terrain of women’s reproduction the stakes of a necropolitical environment marked by occupation, population control, and fears of genocide are brought into high relief.
Erotic senses: Powering Brazilian Black queer existence in gynecological spaces
Nessette Falu
This paper explores how Brazilian Black queer women’s sensorial knowing expresses the ways that anti‐Blackness and anti‐queerness are experienced within Brazilian gynecological spaces. I show how Black queer forms of sensory representations signal the intimacy of occupying place and time in power relations. What does it mean to feel, touch, and see the mechanisms of prejudice and institutional power? What are the sounds and vibrations of racism and heteronormativity in medicine? What do the senses tell us about Black queer bodies’ orientations and adverse reactions within those spaces? I engage the senses to understand how sensorial knowledge is keenly embedded in the evidence and informs how Black queer life is shaped within the quotidian. I discuss how sensorial experiences for the critical possibilities of conceptualizing sensoriality and social meanings of medical space and place and in relation to the material world of gynecology and its technologies.
Woman in the brain, or the fraught relationship between feminism and mental health
Cinzia Greco
This article explores the complicated relationship between feminism and women’s mental health. I discuss the differences and convergences between neurodiversity and mental health and how feminist theory has approached these topics. While contrasting the pathologisation that mental health disciplines can apply to women, feminism has often reduced mental health conditions to mere manifestations of patriarchy. Using autism as a prism, I propose that the neurodiversity paradigm can be a means to discuss diverse brain and mind experiences without reinforcing pathologisation. The choice of autism has two motivations: while autism is a neurological difference and not a mental illness, the complex experiences of autistic women exemplify their otherness and exclusion, highlighting the marginalisation of women with atypical brains not just in society but also in feminist theories and practices
Drawing on documentary sources and discussing theoretical approaches from the UK, the USA, and, to a lesser extent, other English-speaking countries, this article aims to advance the feminist discourse on mental health. I illustrate the necessity to enrich feminist perspectives on mental health and suggest ways to make feminist theories and practices more inclusive of neurodivergent and mad women.
Aisha Casoojee, Katijah Khoza-Shangase, Amisha Kanji
Family-centred intervention optimises the development of communication abilities and academic outcomes in children with hearing loss. Cognisance of family values, respect for family differences and adaptations to cultural and linguistic diversity ensure the collaboration of parent-professional relationships. This study investigated the parental involvement and parental perceptions regarding the communication intervention approaches implemented (i.e., traditional speech-language therapy and listening and spoken language-South Africa—adapted Auditory Verbal Therapy) for children with profound hearing loss. The study was conducted at special schools for children with hearing loss across four provinces in South Africa, where grade-level core skills are taught using a mainstream curriculum complemented by specialised instruction. Data were collected through a parental self-administered survey and a retrospective record review. An inductive analysis of transcripts was conducted, and the Fisher’s exact test assessed associations between data sets. Findings demonstrated limited informational counselling provided to parents regarding communication intervention options. Following the initiation of the communication intervention process, findings indicate parental buy-in, fuelled by their aspirations for their child with a hearing loss. Although results suggest that parents prefer a listening and spoken language therapeutic communication modality, this approach is hindered by the lack of culturally sensitive and linguistically appropriate care. This is an important finding, particularly in multilingual and multicultural contexts like South Africa. These context-specific outcomes emphasise that communication interventionists must be cognizant of parental-informed decision-making, cultural contexts and linguistic sensitivity for effective parent-professional collaborations.
Patient engagement in drug development: dialogically problematizing participation
Claudia Egher, Tamás Bereczky, Lisbeth Snede & Olga Zvonareva
For many years, the field of drug development remained insulated from patient engagement initiatives that became commonplace in healthcare, it is currently experiencing a participatory turn. This has been informed by a re-evaluation of the patients’ insights and of the roles they can play in drug development, with both democratising and technocratic arguments invoked in support of their more substantial engagement. This article problematises the democratising potential of drug development through a knowledge co-production process between the authors of this paper – two scholars and two practitioners in this field. It scrutinises what patients can participate in drug development by zooming in on the Patient Expert Training provided by EUPATI, arguably the most influential and reputable patient education provider in Europe currently. Through their dialogue, the authors highlight the considerable epistemic requirements placed upon patients and warn about the risk of the emergence of participatory practices that rely exclusively on a narrow patient elite. They also reflect upon the benefits and challenges of close collaborations between researchers and practitioners and call for the systemic transformations needed for such knowledge co-production initiatives to become commonplace in academia.
Jennifer S. Carrera, Pastor Cynthia Watkins, Rev. Sarah Bailey, Pastor Ronnie Wiggins, Laura Sullivan, Melissa Mays & Kent Key
At the ten-year anniversary of the Flint water crisis, Flint residents continue to work to improve the well-being of their community and advance community leadership in science. While the water crisis is remembered by most as just an egregious example of government mismanagement, a lesser told story is that of the ongoing leadership and mobilization of Flint residents. Our paper reflects on a collaborative project as part of a larger, sustained partnership in co-producing knowledge about Flint residents’ experiences with the water crisis, their expertise in responding to public health crises, and concerns and curiosities that may be explored as scientific research questions. We detail our investigative effort over five years focusing on understanding Flint residents’ expertise in responding to the water crisis and our processes of working with residents to connect personal experiences to explorable questions. We align the activities of our engagement (focus groups, workshops, a technology co-development pilot study, and interviews) with an iterative process of listening, dialogue, and action consistent with Paulo Freire’s processes for advancing collective consciousness. We position our work as an implementation of liberation sociology by working to explore scientific questions that are meaningful and impactful to disenfranchised populations.
Science, Technology, & Human Values
Tolerable Tests: Regulating Diagnostic Innovation in a Global Health Emergency, Lessons from Ebola
Alice Street, Ann H. Kelly
The response to the 2014-2016 West African epidemic was a watershed for emergency research and innovation, forcing a shift in regulatory norms as evidentiary standards were pitted against humanitarian imperatives and biosecurity concerns. This article examines how those ethical and epistemic negotiations unfolded in practice through the development, testing, and use of novel tools for Ebola diagnosis with a focus on Sierra Leone. We track the priorities placed on the accuracy, feasibility, and clinical efficiency of Ebola diagnostic platforms and explore how these varied over the course of the outbreak and for different actors involved in their deployment. The lack of clarity over which tools might be fit for purpose exposed the profound ambiguities around the nature, scope, and purpose of building in-country Ebola diagnostic capacity. Ultimately, we argue that the accelerated regulatory process coordinated by the World Health Organization operated as a liminal procedure that both revealed the scientific, ethical, and political trade-offs and inequalities attendant to an emerging regime of emergency research and development, and provided a tentative, reflexive platform for regulatory experimentation, deliberation, and reform.
The Trading Zones of Patient Participation: Public Issue Formation in Nondemocratic Situations
Vlas Nikulkin, Olga Zvonareva
This article investigates public issue formation catalyzed by Russian patient organizations (POs) that aim to change healthcare rules and practices following patients’ needs and expectations. Drawing on the socio-ontological approach of science and technology studies, which posits that issues do not exist independently of efforts to address them, we identify three main stages of public issue formation in the studied situation: (1) from individual troubles to systemic problems, (2) from systemic problems to shared concerns, and (3) from shared concerns to public issues. Transforming individual troubles into public issues is neither easy nor straightforward. Yet, as the key actors in the process, POs use events like conferences and roundtables, and consultative spaces like public councils to engage with healthcare experts and state policymakers. We propose to view these events and spaces as trading zones. Facilitating public issue formation through trading zones where collaboration with other healthcare governance actors occurs without consensus over meanings and priorities, POs address suffering among patients in nondemocratic situations where expert knowledge dominates and public participation is generally unwelcome. The resulting issues are public in scope and capability of mobilizing action, yet articulated in a de-publicizing manner that conceals conflicting stakes and commitments.
Gentry Carter, Robin E. Jensen, Jami Baayd, Caitlin Quade, Jessica Sanders
Abortion as a term functions within and across multiple spheres of interaction—medical, legal, public, and lay. Considerable attention has been given to medical and legal definitions regarding abortion. However, limited research exists regarding lay definitions of abortion and how they may be distinct from those in other discursive realms. This is the case even though research suggests lay conceptualizations of reproductive health topics play a central role in shaping reproductive health-related beliefs, norms, and behaviors. In an effort to begin closing this gap in knowledge, this study investigates lay definitions of abortion within the context of the contemporary U.S. reproductive health landscape, focusing on three western states with large rural populations. In a quantitative survey of 2,603 individuals, we explored people’s definitions of abortion by asking them to identify if a range of reproductive scenarios qualify as abortion. Our analysis also examines how specific demographic and social factors influence those definitions.
Results reveal substantial uncertainty among participants about what reproductive situations qualify as abortion, with only one prompted scenario—having a procedure to end a pregnancy after deciding not to be pregnant—consistently classified as abortion. Participants often diverge from medical definitions, sometimes classifying non-medical scenarios as abortion while not classifying medically defined abortion as such. Analysis further demonstrates that lay definitions are influenced by participants’ stances on abortion legality, political ideology, personal experiences, and beliefs about pregnancy. Those who believe abortion should not be legal are more likely to classify pre-implantation scenarios as abortion, while those who believe abortion should be legal tend to classify more scenarios as abortion overall. Our findings underscore the complexity and heterogeneity of lay definitions for abortion and create infrastructure for the continued examination of what those lay definitions are and how they differ according to individual demographics, beliefs, and experiences.
Caroline Cupit, Teresa Finlay, Catherine Pope, Rosemary Hollick, … Neil Basu
Fibromyalgia is a leading cause of disability in the UK and worldwide, but is difficult to diagnose and treat due to unclear pathogenesis and diverse and fluctuating symptoms. Although various treatment modalities are recommended, no treatments have been proven to effect sustainable improvement or recovery, and patients are typically dissatisfied with their care. Increasingly, biopsychosocial services are being developed, that aim to take a multifaceted, holistic approach. In this paper, we draw on a qualitative, ethnographic study of biopsychosocial services in the UK (including 59 interviews, 200 h observation, document review, and stakeholder workshops), that are providing new and promising forms of support. Drawing on Smith’s Sociology for People as our analytic framework, we explore the work that is undertaken in these services. We discover chronicity rhetoric that interrupts practitioners’ and patients’ efforts to promote healing and recovery. We show that chronicity rhetoric is produced and reinforced through Biomedical Research and Welfare Benefits systems. Our findings are likely to have wider applicability to services for other difficult-to-treat conditions that are having increasingly problematic impacts on health, wellbeing and economic productivity worldwide (e.g., chronic pain, Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME)).
Grace E. Venechuk
The job quality gap in the United States continues to widen, with a higher proportion of women and minorities in low-quality jobs. Given that job characteristics tend to cluster, a typological approach may provide new insights into the work-health relationship. Using Latent Class Analysis, I leverage data from Wave V of the National Longitudinal Study of Adolescent to Adult Health and the Occupational Information Network to identify 1) typologies of job quality both in the full sample and at the intersection race-and-gender and 2) the relationship between typologies and two measures of health: risky health behaviors and self-rated health (SRH). In the full sample I identify six job quality classes, including two blue-collar and pink-collar classes. Stratification by race-and-gender reveals additional variation (e.g., blue-collar classes only amongst men). The relationship between job quality classes and health also varies at this intersection: women’s job classes had a stronger relationship with both health outcomes than men’s, and job class appeared to have a stronger relationship with health behaviors among white men vs. non-white men.
The expert eye – Navigating ambiguity in clinical breast radiology
Emma Grundtvig Gram, John Brandt Brodersen, Alexandra Brandt Ryborg Jønsson
Drawing on phenomenological concepts of embodiment and the theory of clinical judgment, we examine how radiologists navigate the inherent risk of overtesting and overdiagnosis in breast cancer screening. Based on 12 weeks of fieldwork at a breast radiology department, we explore how radiologists navigate clinical ambiguity when women are recalled for further diagnostics following an abnormal screening mammogram. Radiologists expressed a strong sense of ethical obligation and responsibility, shaped by the structural and moral expectations of the screening programme, which fostered a precautionary mindset. We show how radiologists draw on a combination of knowledge, experience, sensory input, and emotional reasoning to navigate these ethical responsibilities. This interplay of emotions, ethics, and diagnostic skill constitutes a form of embodied expertise, which we term the “expert eye”. The expert eye enables radiologists to critically engage with guideline-based diagnostics and perform less defensive, context-sensitive practices in a high-stakes setting. Ultimately, we argue that this form of expertise plays a crucial role in bridging the epistemic gap of overdiagnosis and the fundamental inability to know about or predict the progression of ambiguous findings. Our analysis also highlights the complexity of managing overtesting and overtreatment in clinical practice and suggests that supporting subjectivity in medicine, through the use of the expert eye, may in fact allow clinicians to perform higher-value care.
Tine Bennedsen Gehrt, Camilla Brændstrup Laursen, Marie Kryger Lock, Claus Bossen, … Ulla Væggemose
Emergency medical services handle acute and life-threatening medical situations. Despite their global availability, research on those who frequently call these services is sparse. The present study aims to examine call patterns, motivations for calling, and indicators of well-being among frequent callers to the emergency medical services by utilizing multiple data sources. The study was conducted in the Central Denmark Region, Denmark. During a four-month period (May to August 2023), we identified all individuals, who had made ≥5 calls to the emergency medical services within the previous six months (i.e. frequent callers). Following a new call, frequent callers aged ≥18 years were invited to complete a questionnaire, attend an interview, or both. In total, 413 frequent callers were identified, representing 2.3 % of all callers to the emergency medical services during the study period. The frequent callers accounted for 1803 calls during the four months, representing 7.1 % of all emergency calls. Seventeen frequent callers completed the questionnaire. They reported varying levels of psychological well-being, and that a major reason for calling was not being able to endure their symptoms or problems anymore. Thematic analysis of interviews with 12 frequent callers highlighted four main themes: ‘everyone calls the emergency medical services for a reason’, ”help’ can take many forms’, ‘difficulty navigating the healthcare system’, and ‘unfulfilled expectations and disappointment with ‘the system”. The findings indicate that frequent callers to the emergency medical services comprise a small but diverse group, accounting for many calls. A central theme across data sources was difficulty navigating the healthcare system.
Sofie Vranken, Femke Geusens, Caroline Christiaens, Kathryn Greene, Kathleen Beullens
Media literacy interventions are promising approaches to mitigate the harmful impact of media on substance use behaviors, including smoking and vaping. Some media literacy interventions adopt an interactive format, involving adolescents in the creation of counter messages that challenge pro-substance media narratives. However, research has largely focused on the impact of media literacy interventions on behaviors, leaving a critical gap in understanding the actual content of messages that adolescents produce. Consequently, this study presents a content analysis of N = 256 anti-smoking/vaping messages created by Belgian adolescents during the #Smokefree intervention, which aimed to discourage smoking and vaping by involving adolescents in the planning/design of their own messages. Overall, adolescents mostly focused on vapes in their messages, which reflects a societal trend whereby vaping is becoming more prevalent while smoking is decreasing among adolescents. More importantly, adolescents relied on negative outcome expectations and descriptive norms to discourage smoking/vaping, and they were able to implement basic heuristic cues necessary to enhance message appeal in their messages. These findings suggest that adolescents can apply critical media literacy skills to their own anti-smoking/anti-vaping messages. It also sheds light on which elements of the media literacy intervention resonated with youth, thereby informing the development of future health campaigns and interventions.
Kate Hampshire, Heather Hamill, Simon Mariwah, Samuel Asiedu Owusu, … Gerry Mshana
The informal cross-border trade (ICBT) in medicines in Africa is an under-explored phenomenon, with potentially serious public health implications. We conducted ethnographic research (Dec 2022–Jan 2023) at two major border crossings in East and West Africa: between Ghana-Togo at Aflao/Lomé and Kenya-Tanzania at Namanga. Observations at strategic locations were complemented by informal interviews with traders, transporters, retailers, border officials and other stake-holders. Medicines were being transported informally across borders in substantial quantities, through small-scale and larger-scale operations, drawing in multiple actors. Generic pharmaceutical products were generally moving from low-cost, high-availability regimes to higher-cost, lower-availability ones, driven by customer demand for affordable medicines and facilitated by regulatory gaps and low-level corruption. Across the Ghana-Togo border, we observed a counter-movement of supplements and sexual/body enhancers. Medicine flows reflect cross-border disparities in pharmaceutical availability, pricing and regulation, rooted in colonial histories and contemporary economic realities. This trade is an understandable response to the lack of affordable essential medicines and livelihood insecurities. However, it also poses significant public health and pharmaceutical governance risks, disproportionately affecting the poorest.
Health lifestyles at work: availability, barriers and participation in workplace wellness
William J. Fleming
The workplace is an ever more popular site for health promotion, but remains an underexplored factor in health lifestyles theory; whereas, sociological accounts of workplace wellness typically view it critically as managerial control. These perspectives both miss that participation in workplace wellness may constitute socially structured health lifestyles. Addressing this gap, I extend a theoretical model to bring together health lifestyles theory and critical wellbeing studies. To support the model, I provide an empirical account of the availability of, participation in, and barriers to workplace wellness. I analyse a multi-organisation sample of British workers (N = 27,919 individuals; 143 organisations) to reveal that engagement with wellness has distinct associations with multiple social factors (class, race and gender), job factors (level, contract, working hours and commute), and organisational context. Theories of health lifestyles ought to include work characteristics and managerial regimes, and critiques of wellness must analyse how social position affects workers’ experiences of wellness.
Catherine Isadora Côté
Chronic pain invalidation in medical encounters has important consequences, including higher reported pain levels, lower well-being, increased disability, and poorer mental health outcomes. To understand this phenomenon, some studies use the theoretical framework of epistemic injustices, which consist of the lower value granted to someone’s knowledge due to biases affecting their credibility (testimonial injustice), or due to a lack of shared resources in understanding and sharing their own experience, which affects intelligibility (hermeneutical injustice). Literature on epistemic injustices in healthcare is almost exclusively theoretical, occulting the voices of those primarily affected by these injustices. This gap is contributing to the reproduction of epistemic injustices in scientific literature by giving a lower consideration to relevant lived experience. This study aims at better understanding the mechanisms allowing epistemic injustices to occur in the patient-healthcare provider relationship from a patient perspective. Narrative interviews (n = 17), with people living with chronic pain recounting their validation and invalidation experiences in health encounters, were conducted. Results identify mechanisms underlying testimonial injustices (i.e., stereotypes based on oppression systems and providers’ epistemic authority), hermeneutical injustices (i.e., dominance of a biomedical scheme and limitations of language), and both (i.e., institutional opacity and other organizational issues). These results provide an integrated view of some mechanisms underlying epistemic injustices that may contribute to elaborate more efficient interventions to limit epistemic injustices in the relationship between patients and healthcare providers.
Lilli Aini Rokkonen, Henni Alava
Menstrual-related migraines affect a large number of people in childbearing age. This article brings together a focus on motherhood and migraine to contribute to an under-researched area of migraine studies. Drawing on crip theory, feminist parenting studies and social studies on chronic pain, we develop the notion of ‘crip mothering’ to describe how mothering takes its shape at the intersection of individual desires and abilities, cultural ideals and social relations, and the affordances of biomedical research and clinical care. We illustrate this through analysis of in-depth interviews with women living with hormonal migraine in Finland. Emerging in these interviews are three modes of mothering: mothering the unborn; mothering with pain; and mothering as intergenerational reparation. Interlocutors regularly recounted experiences of migraine pain being normalized and undertreated, particularly during pregnancy and lactation. The ableist and gendered attitudes towards motherhood and pain demand attention.
Primitivist tropes around community in global mental health controversies: the case of Brazil
Francisco Ortega
This article examines the ways in which notions of community are mobilised in mental health according to different agendas and political purposes. First, it analyses how the framework of primitivism is advanced in notions of community deployed in global mental health controversies. Following Lucas and Barret, primitivist tropes opposing barbaric and arcadian views of community underlie debates around the role of family and community in the provision of mental healthcare. The second part explores primitivist tropes around psychiatric reform and community mental healthcare in Brazil. On the one hand, barbaric perspectives are mobilised to criticise the Brazilian psychiatric reform and the organisation of mental health care in the community; on the other hand, arcadian visions that idealise the role of the family and the community in mental health care often underate the barriers to the implementation of effective and quality mental healthcare. This is particularly acute in a country where health care is chronically underfunded, and families and communities face many difficulties to access quality health and social care. Mental health polarisation diverts scarce resources, hinders intersectoral and professionals’ collaboration and obstructs the development of robust mental health models and their implementation in local contexts, especially amongst vulnerable populations.
Johan Söderberg, Jakob Lundgren
The controlled substance “ibogaine” is reported to have unique addiction-interrupting properties. Due to its illegal status, the drug’s application for treating substance dependency has been explored by a network of addicts and harm reduction activists in underground and off-shore clinics. The article investigates the strategies that practitioners have adopted to mitigate harm from administrating this potentially cardiotoxic drug. The case study invites us to probe the affordances (or lack thereof) of a medical subculture to create a global governance structure in the absence of public funding and state regulations. The wider significance of the case study rests on our theoretical claim that the global market in alternative addiction care is indicative of the future of a market-based healthcare system at large.
Identity Characteristics As Moderators of Discrepancy on Well-being
Mary Gallagher
Research finds that discrepancies between individuals’ self-views and their perceptions of how others view them decrease psychological well-being. According to identity theory, certain characteristics of identities may exacerbate the impact of discrepancy on well-being, while stress process theory suggests they may have the opposite, weakening effect. Using telephone survey data from a national probability sample of adults, I investigate whether several identity characteristics—subjective importance of an identity (prominence), extensiveness (interactional commitment) and intensiveness of ties (affective commitment) to others that are based on an identity, and the potential costs of failing to fulfill the role obligations of an identity (role-based commitment)—moderate associations between discrepancy and well-being (depressive symptoms and self-esteem) in two types of identities (obligatory and voluntary). I find that identity commitment buffers the effects of discrepancy in obligatory identities and exacerbates the effects of discrepancy in voluntary identities. Implications of these findings are discussed.
Ephraim Shapiro, Alean Al-Krenawi, Gil Zukerman, Malka Melamed, Clara Dana Shtibi, Liat Korn
As well as affecting physical health, COVID-19 can impact mental health. While many studies have examined stigma related to having COVID-19, almost none have examined the larger issue of attitudes toward mental health and stigma since the pandemic began. This study examined public/external mental health stigma among Israelis after the COVID-19 outbreak, including whether there were changes to it. Surveys were administered to a sample of 1,099 Israelis aged 18–55 and multivariate analyses were performed. Israelis were found to have faced increased mental health risks since the COVID-19 outbreak and extensive mental health stigma was found among many of them. However, the stigma was reduced in later months as well as during lockdown periods. Variations in stigma were found by types of stigma and mental health illness, as well as by sociodemographic groups. COVID-19 can negatively impact mental health and appropriate mental healthcare utilization, although there may be positive effects as well. A crisis such as COVID-19 which began as a physical threat can cause society to reconsider how it views mental health, with important and potentially positive implications in the long term, and potential lessons learned for future crises. Interventions are needed, especially when appropriately tailored for vulnerable populations.
Sarah R. Meyer, Alli Gillespie, Ilana Seff, Cyril Bennouna, Najat Qushua, Iulia Tothezan, Baffour Boaten Boahen-Boaten, Carine Allaf, Lindsay Stark
Adolescent refugees from the Middle East and North Africa (MENA) region face significant acculturation challenges and stressors in the United States. This qualitative study draws upon the integrated motivational-volitional model to understand MENA-background adolescents’ psychosocial wellbeing and suicide risk in three U.S. cities. Local service providers served as key informants (n = 27), sharing in-depth reflections on supporting newcomer students in education, mental health, and refugee services. Analysis also includes focus group discussions with MENA-background adolescents (n = 11) who participated in a photovoice activity. Four key themes emerged: (1) acculturation stressors; (2) influence of family contexts; (3) community belonging, expectations, and support; and (4) school belonging. Service providers and students described adolescents’ challenges in navigating dual identities, conflicting expectations, and strong cultural norms surrounding gender and mental health. Implementation and evaluation of interventions to address both systemic and identity-based acculturative challenges are central to improving mental health and reducing suicide risk among this population.
Acculturation, Depressive Symptoms, and Friendship Instability Among Immigrant Adolescents
Yezhen Li, Alyssa W. Goldman
Recent scholarship suggests that personal tie instability, that is, the dissolution of old ties and the formation of new ties, may lead to psychological distress. However, this association remains understudied among the immigrant population, for whom acculturation may present unique challenges to both personal tie stability and psychological well-being. Using data from the National Longitudinal Study of Adolescent to Adult Health, we investigate the mental health implications of instability in immigrant adolescents’ same-sex best friends, and how it explains the association between acculturation and depressive symptoms. We find that friendship instability was associated with higher depressive symptoms only among immigrant adolescents with a low level of acculturation. For more acculturated adolescents, replacing their original friendship with an interracial friend predicted lower depressive symptoms. These findings imply that friendship instability constitutes a dimension of acculturative stress, with detrimental effects unique to immigrant adolescents in the early stages of acculturation.
Heeyoung Lee, Seong-Jo Jeong
Previous studies on the coming out and the mental health of sexual minorities have often overlooked experiences in non-Western societies and the various patterns of coming out within the immediate families. Using the most recent and comprehensive data on 2,381 LGB youths in South Korea, this study examined whether different patterns of coming out to family members are related to different levels of depression and whether these relationships differ between men (gay and bisexual man) and women (lesbian and bisexual woman). Contrary to the prevalent view of coming out as a universally liberating process, our findings indicate that coming out to family is related to increased depressive symptoms in South Korea. Moreover, this coming out stress shows a gendered pattern. Among sexual minority men, compared with those who did not come out, youths who came out to everyone, mother and father, and only siblings report a higher depression level. Being bisexual among men did not provide any protective effect. In contrast, there is no difference observed across coming out patterns among sexual minority women. These findings highlight the importance of considering to whom and in what cultural contexts one comes out to understand the mental health of sexual minorities.