Contested legitimacy for anthropologists involved in medical humanitarian action: experiences from the 2014-2016 West Africa Ebola epidemic (open access)
Shelley Lees, Jennifer Palmer, Fanny Procureur, and Karl Blanchet
The growing involvement of anthropologists in medical humanitarian response efforts has laid bare the moral and ethical consequences that emerge from humanitarian action. Anthropologists are well placed to examine the social, political, cultural and economic dimensions that influence the spread of diseases, and the ways in which to respond to epidemics. Anthropologists are also, with care, able to turn a critical lens on medical humanitarian response. However, there remains some resistance to involving anthropologists in response activities in the field. Drawing on interviews with anthropologists and humanitarian workers involved in the 2014-2016 West African Ebola epidemic, this paper reveals the complex roles taken on by anthropologists in the field and reveals how anthropologists faced questions of legitimacy vis-à-vis communities and responders in their roles in response activities, which focused on acting as ‘firefighters’ and ‘cultural brokers’ as well as legitimacy as academic researchers. Whilst these anthropologists were able to conduct research alongside these activities, or draw on anthropological knowledge to inform response activities, questions also arose about the legitimacy of these roles for anthropological academia. We conclude that the process of gaining legitimacy from all these different constituencies is particular to anthropologists and reveals the role of ‘giving voice’ to communities alongside critiquing medical humanitarianism. Whilst these anthropologists have strengthened the argument for the involvement of anthropologists in epidemic response this anthropological engagement with medical humanitarianism has revealed theoretical considerations more broadly for the discipline, as highlighted through engagement in other fields, especially in human rights and global health.
Not-knowing and the proliferation of assumptions: local explanations of Cutaneous Leishmaniasis in Suriname (open access)
Sahienshadebie Ramdas and Sjaak van der Geest
Why do patients and others confronted with cutaneous leishmaniasis (CL) – a parasitic skin disease – in the hinterland of Suriname, South America, provide a dazzling variety of aetiological explanations for one single illness? And how do these explanations reflect local knowledge of and interest in the origin of illness? In this article, we explore these questions using the concept of ‘not-knowing’, as introduced by Murray Last in 1981. One of Last’s conclusions is that ‘don’t knows’ or ‘don’t cares’ reflect people’s disinterest in medicine. The aim of this article, however, is to draw attention to another aspect of not-knowing: it may lead to a proliferation of explanatory assumptions, unhindered by precise knowledge. In other words, multiple explanations mask not-knowing, which is from a methodological point of view a rarely observed element in social science research and constitutes an important addition to Murray Last’s well known argument. The paper describes findings based on anthropological fieldwork carried out between September 2009 and December 2010 at the Dermatology Service in Suriname’s capital Paramaribo and among 205 CL patients and 321 inhabitants in various communities in the hinterland. As this article shows, both knowing and not-knowing are rooted in the various contexts of people’s daily lives and reflect their historical, socio-cultural, occupational, educational, biological, environmental, and public health-related conditions. Public health authorities should explore not-knowing more seriously in their efforts to prevent illness, since knowing about not-knowing is valuable in the design of health education and prevention programmes.
Flower boys and muscled men: comparing South Korean and American male body ideals using cultural domain analysis
Lawrence T. Monocello, William W. Dressler
Body image disturbance and eating disorders are rising all over the world. However, little is known about experiences of body image in men across cultural groups, and measurement tools often fail to account for the profound ways in which culture and gender can affect these data. An American cultural model of the ideal male body was compared with that of South Koreans using cultural domain analysis and residual agreement analysis. Cultural domain analysis gives researchers the ability to systematically study cultural models based on informants’ emic understanding of phenomena; residual agreement analysis evaluates the patterns of agreement in disagreement with a larger cultural model. This study shows that Americans and South Koreans often overlap in their assessments of the desirability of male bodily features; however, they also strongly endorse many differing features, as well as similar features for different cultural reasons. For example, Americans endorse muscularity because it indexes physical prowess and health; South Koreans only sometimes endorse muscularity, mainly as an aesthetic choice. As a result, psychometric tools for measuring body dissatisfaction that are uncritically adopted for use in cross-cultural research may miss important information affecting the validity of findings and the efficacy of prevention campaigns and treatment plans.
Patient and clinician communication practices during the DSM-5 cultural formulation interview field trial
Neil Krishan Aggarwal, Kryst Cedeno and Roberto Lewis-Fernandez
Cultural psychiatrists and medical anthropologists have collaborated to help clinicians screen for culture-related issues in patient explanatory models of illness and to enhance the clinical processes of engagement, diagnosis, and treatment planning. This effort prioritises patient perspectives on suffering and healing to counter the trend of symptom-based interviews which assume biologically determined models of mental disorders. The 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) includes the Cultural Formulation Interview (CFI), a semi-structured questionnaire for eliciting patient explanatory models. This paper analyses specific linguistic meanings and practices that could account for patient perceptions of improved rapport with clinicians, clinician perceptions of improving information gathering, and cultural models of health and illness during the DSM-5 field trial piloting the CFI. Twenty-seven audiotapes were analysed through the Roter Interaction Analysis System (RIAS), a standardised method for examining medical interviews based on ethnographic studies of small-group communication. After an introduction with procedural and reassurance statements to orient communication, the CFI’s open-ended questions elicited patients’ opinions on interpersonal, environmental, and biomedical information. Clinicians made facilitation and activation statements for patients to speak more and informed patients about what to expect. Patients constructed cultural models of illness that weaved interpersonal, environmental, and biomedical information. Clinicians and patients made rapport-building statements to each other. A RIAS-derived patient-centred score indicates that CFI sessions addressed patient concerns. Our work offers a way to analyse the discursive construction of culture in health settings and patient-centredness through detailed examinations of linguistic meanings and practices.
Facets of clinical stigma after attempted suicide in Mumbai, India
Mitchell G. Weiss and Shubhangi R. Parkar
Community stigma studies may neglect clinically relevant experience and views of stigma that are important features of mental health problems. After attempting suicide, patients in a hospital emergency ward in Mumbai, India, were assessed for stigma referring to underlying prior problems motivating their deliberate self-harm (DSH) event, the DSH event itself and serious mental illness generally based on both anticipated community views and distinctive personal views. In this cultural epidemiological study of 196 patients, assessment items and four corresponding indexes were analysed and compared on a four-point scale, 0 to 3, for prominence of indicated stigma. Narratives from patients with high, low and discordant levels of stigma for prior problems and DSH events were analysed and compared. Disclosure, critical opinions of others and problems to marry were greater concerns for DSH events than prior problems. Problem drinking, unemployment, and sexual or financial victimization were common features of prior problems. Impulsivity of the DSH event and externalizing blame were features of lower levels of stigma. Ideas about most people’s views of serious mental illness were regarded as more stigmatizing than patients’ prior problems and DSH event; patients’ personal views of serious mental illness were least stigmatizing. Findings suggest linking suicidality and stigmatized mental illness may discourage help seeking. Suicide prevention strategies should therefore emphasize available help needed for severe stress instead of equating suicidality and mental illness. Findings also indicate the relevance of assessing clinical stigma in a cultural formulation and the value of integrated qualitative and quantitative stigma research methods.
The cultural construction of preterm birth in the United States
Janet M. Bronstein
This commentary explores four features of the cultural construction of pregnancy and childbirth in the United States: risk categorization as an aspect of reproductive governance, medicalization, intensive mothering with its implications for gender stratification, and the definition of personhood as beginning at conception. The cultural construction of preterm births (those that end before gestation is complete at about 37 weeks) is interwoven with beliefs about risk in pregnancy. Health risk categories overlap with socially stigmatized characteristics and behaviors, opening sub-groups of women up to intensive surveillance and control. The belief that preterm births are preventable and treatable reinforces medical authority and rationalizes the large allocation of resources to specialty (as opposed to primary) maternal and infant care. Expectations for maternal behavior when preterm birth is threatened and when it occurs reinforce norms of intensive mothering, while the ability to keep preterm infants alive reinforces beliefs about fetal personhood. In these ways, the cultural construction of preterm birth in the U.S. holds the broader construction of pregnancy and childbirth in place by raising the stakes of deviation from norms of reproduction to matters of criminality, death, or serious disability.
Cultural Anthropology (Open Access)
As participants in a small trust network smuggle medication across ISIS-controlled northern Iraq to hospitals in the besieged city of Mosul, they theorize their pragmatic entanglements with unknown others. Based on ethnographic fieldwork in 2014 and 2015, as well as the author’s participation in this network, the essay introduces enunciatory trust, or trust without confidence, as an analytical framework for surviving (in)security in Iraq.
The Work of Disaster: Building Back Otherwise in Post-Earthquake Nepal
What does a disaster generate? This article brings a critical phenomenological approach into conversation with theories of event to trace the emergence of a mental health crisis and its consequences in Nepal after the 2015 earthquakes. Following the disaster, people who received psychosocial counseling often presented chronic problems that had become visible through the frame of crisis and its ethical demands. At the same time, humanitarian agencies were aware of the logics of crisis and strategically used the disaster as an opportunity to increase mental health governance under the rubric of “building back better.” I demonstrate that these phenomena are linked consequences of the work of disaster, the destruction and creation of worlds set into motion by disaster and its management. I argue that a phenomenological approach to disaster helps us attend to the ways a priori frames of crisis and “the better” create and foreclose possibilities both for care and for building the world back otherwise.
This article examines how the community mental health program run by the Chinese state conceptualizes, mobilizes, and molds the family. My fieldwork shows that, on the one hand, the program defines care biomedically and connects it to managing security risks in the population. The state fashions itself as paternal while displacing most responsibilities for patient care and management onto the supposedly authoritative families. On the other hand, caregivers—mostly women and the elderly—may resort to practices publicly denounced but privately enabled by the program, such as covert medication and home confinement. They do so not only to manage patients from a position of vulnerability and deprivation but also to compassionately engage with patients’ suffering and non-medical desires. These two entangled kinship correlates of state power, which I call “biopolitical paternalism” and its “maternal supplements,” prove critical for understanding the work of community governance in China and beyond.
Structures of Resentment: On Feeling—and Being—Left Behind by Health Care Reform
Jessica M. Mulligan and Emily K. Brunson
Described by many as an emotional state rooted in having been treated unfairly, resentment has surged over the past decade. Resentment politics troubled the passage and implementation of the Affordable Care Act (ACA, 2010) in the United States. While some people gained access to health insurance through the ACA, others experienced continued exclusion from affordable coverage. Drawing on ethnographic interviews with poor whites from Florida, Rhode Island, and Texas, we show how uninsured individuals talked about and experienced resentment through contradictory tropes of “us versus them,” deservingness, and personal responsibility. We argue that policies based in resentment, occurring on both national and state levels, structured these individuals’ experiences and amplified their resentment sentiments. Through this case study we argue that resentment is more than an emotion: it is also a force that structures policies and their implementation. Resentment policies in turn create the social, political, and economic circumstances that generate resentment feelings.
Health policies and strategies promote the involvement of people with illness experiences in service development and production, integrating them into settings that have traditionally been domains of health professionals. In this study, we focus on the perspectives of people with personal illness experiences and explore how they justify involvement, position themselves as legitimate actors and forge collaborative relationships with health professionals. We have used discourse analysis in analysing individual interviews conducted with peer support workers and experts by experience (n = 17) who currently work in Finnish health services. The interviewees utilised discourses of empowerment, efficiency and patient-centeredness, aligning themselves with the justifications constructed by patient movements additionally to those found in current health policies. Both groups wanted to retain critical distance from professionals in order to voice criticisms of current care practices, yet they also frequently aligned themselves with professionals in order to gain legitimacy for their involvement. They adopted professional traits that moved them further from being lay participants sharing personal experiences and adopted an expert position. Although national-level policies provided backing and legitimacy for involvement, the lack of local-level guidance could hinder the practical implementation and make involvement largely dependent of professionals’ discretion.
Exploring young people’s emotional well-being and resilience in educational contexts: A resilient space?
Chris Cocking, Nigel Sherriff, Kay Aranda, Laetitia Zeeman
The term ‘resilience’ is pervasive in narratives of young people’s emotional well-being. However, the meaning it has for those it describes is perhaps less well understood. Resilience was investigated as part of an engagement exercise into health improvement commissioning in educational contexts in the South East of England. One hundred and nine young people in total were involved, and this article reports data collected from two areas that were explored, comprising a sub-set of 58 participants: emotional well-being and resilience (n = 23) and the whole school approach (n = 35). It was apparent that while not all participants engaged with the term ‘resilience’ itself, they nevertheless often adopted creative individual and collective strategies to protect and enhance their emotional well-being. Furthermore, participants reported a sense of resilience that arose from a shared sense of adversity that helped strengthen collective support and solidarity, thus supporting previous work on emergent collective resilience. Theoretical and practical implications are discussed, along with a recommendation for more participatory research, so that young people can be more confident that their views are being considered within such exercises.
“Playing the system”: Structural factors potentiating mental health stigma, challenging awareness, and creating barriers to care for Canadian public safety personnel
Rosemary Ricciardelli, R. Nicholas Carleton, Taylor Mooney, Heidi Cramm
There are growing concerns about the impact of public safety work on the mental health of public safety personnel; as such, we explored systemic and individual factors that might dissuade public safety personnel from seeking care. Public safety personnel barriers to care-seeking include the stigma associated with mental disorders and frequent reports of insufficient access to care. To better understand barriers to care-seeking, we thematically analyzed the optional open-ended final comments provided by over 828 Canadian public safety personnel as part of a larger online survey designed to assess the prevalence of mental disorders among public safety personnel. Our results indicated that systematic processes may have (1) shaped public safety personnel decisions for care-seeking, (2) influenced how care-seekers were viewed by their colleagues, and (3) encouraged under-awareness of personal mental health needs. We described how public safety personnel who do seek care may be viewed by others; in particular, we identified widespread participant suspicion that coworkers who took the time to address their mental health needs were “abusing the system.” We explored what constitutes “abusing the system” and how organizational structures—systematic processes within different public safety organizations—might facilitate such notions of abuse. We found that understaffing may increase scrutiny of injured public safety personnel by those left to manage the additional burden; in addition, cynicism and unacknowledged structural stigma may emerge, preventing the other public safety personnel from identifying their mental health needs and seeking help. Finally, we discuss how system-level stigma can be potentiated by fiscal constraints when public safety personnel take any leave of absence, inadvertently contributing to an organizational culture wherein help-seeking for employment-related mental health concerns becomes unacceptable. Implications for public safety personnel training and future research needs are discussed.
Nurses’ knowledge and deliberations crucial to Barcoded Medication Administration technology in a Dutch hospital: Discovering nurses’ agency inside ruling
Marcel Boonen, Janet Rankin, Frans Vosman, Alistair Niemeijer
This article shows how Barcoded Medication Administration technology institutionally organizes and rules the daily actions of nurses. Although it is widely assumed that Barcoded Medication Administration technology improves quality and safety by reducing the risk of human error, little research has been done on how this technology alters the work of nurses. Drawing on empirical and conceptual strategies of analysis, this qualitative study used certain tools of institutional ethnography to provide a view of how nurses negotiate Barcoded Medication Administration technology. The approach also uses elements from practice theory in order to discern how technology operates as a player on the field instead of being viewed as a ‘mere’ tool. A literature review preceded participant observation, whereby 17 nurses were followed and data on an orthopaedic ward were collected over a period of 9 months in 2011 and 2012. Barcoded Medication Administration technology relies on nurses’ knowledge to mediate between the embedded logics of its design and the unpredictable needs of patients. Nurses negotiate their own professional logic of care in the form of moment-to-moment deliberations which subvert the ruling frame of the barcoded system and its objectified model of patient safety. The logic of Barcoded Medication Administration technology differs from the logic of nursing care, as this technology presumes medication distribution to be linear, even though nurses follow another line of actor-bound safety practices that we characterize as ‘deliberations’.
The rise of fitness-tracking devices such as the Fitbit in personal health and wellness is emblematic of the use of data-gathering health and fitness technologies by institutions to create a surveillance regime. Using postings on Fitbit community message boards and the theoretical frames of Michel Foucault and sociomaterialist scholars, the goal of this article is to analyse the experiences of those who choose to self-track using a Fitbit and the constellation of barriers and facilitators (human and non-human) related to social class and gender that enable and constrain one’s ability to use a Fitbit as intended. First, we examine the social class assumptions of Fitbit as a risk management tool in the workplace, illustrating what elements must come together – both human and non-human – to create an environment that enables walking throughout the workday to combat the risks of sedentary work. Second, we explore the ways that Fitbit users ‘confessed’ to their past inactivity and how gendered home labour differently enables and constrains some of the users’ abilities to act on their confessions. Ultimately, one’s ability to engage in the idealized use of the Fitbit in the minds of its users, or what we term the ‘Fitbit subject assemblage’, is structured by numerous material and social factors that must be taken into account when examining the mechanics of power in fitness tracking.
From substance to process: A meta-ethnographic review of how healthcare professionals and patients understand placebos and their effects in primary care
Doug I. Hardman, Adam W. A. Geraghty, George Lewith, Mark Lown, Clelia Viecelli, Felicity L. Bishop
Research suggests that a ‘placebo’ can improve conditions common in primary care including pain, depression and irritable bowel syndrome. However, disagreement persists over the definition and clinical relevance of placebo treatments. We conducted a meta-ethnographic, mixed-research systematic review to explore how healthcare professionals and patients understand placebos and their effects in primary care. We conducted systematic literature searches of five databases – augmented by reference chaining, key author searches and expert opinion – related to views on placebos, placebo effects and placebo use in primary care. From a total of 34 eligible quantitative, qualitative and mixed-methods articles reporting findings from 28 studies, 21 were related to healthcare professionals’ views, 11 were related to patients’ views and two were related to both groups. In the studies under review, healthcare professionals reported using placebos at markedly different frequencies. This was highly influenced by how placebos were defined in the studies. Both healthcare professionals and patients predominantly defined placebos as material substances such as ‘inert’ pills, despite this definition being inconsistent with current scientific thinking. However, healthcare professionals also, but less prevalently, defined placebos in a different way: as contextual processes. This better concurs with modern placebo definitions, which focus on context, ritual, meaning and enactivism. However, given the enduring ubiquity of substance definitions, for both healthcare professionals and patients, we question the practical, clinical validity of stretching the term ‘placebo’ towards its modern iteration. To produce ‘placebo effects’, therefore, primary healthcare professionals may be better off abandoning placebo terminology altogether.
Permeable boundaries? Patient perspectives on space and time in general practice waiting rooms
Robert A. Kearns, Pat M. Neuwelt, Kyle Eggleton
This paper considers an under-examined space in primary health care – the reception area/waiting room. This space can be challenging to negotiate, particularly for those who experience social marginalisation. We begin by situating the significance of the ‘entry into the health care setting’ in the patient journey in terms of time as well as space. Through an analysis of interview and focus group data gathered in a New Zealand study, we highlight ways that patients view these spaces as firmly bounded and confronting. In reflecting on the data, we then identify the potential for these spaces to be more permeable. We conclude that this spatio-temporal context need not be one of constraint. Rather, there are ways in which the boundaries of this space can be potentially enabling to those required to pause in the process of enacting patienthood.
Therapeutic or detrimental mobilities? Walking groups for older adults (open access)
Laura Isobel Paddon
The health benefits of walking through greenspace have earned widespread academic attention in recent years and have been termed ‘therapeutic mobilities’. As a result, walking groups are actively encouraged by health professionals as a way to promote ‘healthy ageing’. This paper examines whether the promotion of community-led walking groups relies upon overly optimistic understandings that portray walking in greenspace as an inherently therapeutic practice. Accordingly, this paper introduces the concept of ‘detrimental mobilities’ to explore how the shared movement promoted via walking groups may not always be inherently therapeutic and may have some detrimental impacts on the individuals who take part in these activities. Drawing on findings from in-depth walking interviews with older members of the ‘Walking for Health’ scheme in Southampton, England, this paper examines how mobilities have the potential to disable, as much as they enable, health and wellbeing.
Knowledge, attitudes, and practices regarding dengue, chikungunya, and Zika in Cali, Colombia
M. R. Desjardins, I. Casas, A. M. Victoria, D. Carbonell, D. M. Dávalos, E. M. Delmelle
Dengue fever (DENF), chikungunya (CHIK), and Zika are responsible for the majority of the burden caused by vector-borne diseases (VBDs); which are produced by viruses primarily transmitted by the Aedes mosquito. Aedes have become prolific in urban areas due to a combination of climate change, rapid urbanization, increased human mobility, and globalization, causing the three VBDs to emerge in novel regions. Community knowledge can provide detailed insights about the spatial heterogeneity of disease risk and rates within a particular region, improving public health interventions. Knowledge, Attitude, and Practice (KAP) surveys are used to shed light on at-risk communities’ understanding of the vector, the pathogen, prevention and treatment strategies. Little is known how KAP varies among diseases, and among neighborhoods within a city. Understanding KAP variation among co-circulating VBDs at a fine-level, especially differences between endemic and emerging diseases, can improve targeted interventions, education programs, and health policy. We administered KAP surveys to 327 individuals in healthcare centers and selected neighborhoods in Cali, Colombia in June 2019. We utilized generalized linear models (GLMs) to identify significant predictors of KAP. Our findings suggest that knowledge is related to community characteristics (e.g. strata), while attitudes and practices are more related to individual-level factors. Access to healthcare also forms significant predictor of residents participating in preventative practices. The results can be leveraged to inform public health officials and communities to motivate at-risk neighborhoods to take an active role in vector surveillance and control, while improving educational and surveillance resources in Cali, Colombia.
(Re)shaping the self: An ethnographic study of the embodied and spatial practices of women who use drugs
Alexandra B. Collins, Jade Boyd, Sandra Czechaczek, Kanna Hayashi, Ryan McNeil
While gendered experiences of drug use have been well-established, understanding how women resist structures that constrain their agency is important for mitigating drug-related harms, especially as overdose has become North America’s leading cause of accidental death. Drawing on the intersectional risk environments of WWUD, this ethnographic study examined how gendered expectations of women’s drug use, appearance, and comportment influenced vulnerability to overdose within the context of a fentanyl-driven overdose crisis. This community-engaged ethnography, conducted in Vancouver, Canada from May 2017 to December 2018, included in-depth interviews with 35 marginally-housed WWUD (transgender-inclusive) and approximately 100 h of fieldwork in single room accommodation (SRA) housing and an established street-based drug scene. Data were analyzed thematically with attention to embodiment, agency, and intersectionality. Findings highlight how gendered expectations and normative violence impacted women’s use of space, both in the drug scene and SRAs. To resist efforts to ‘discipline’ their bodies, participants engaged in situated gender performances. Physical appearance was also deemed critical to managing drug use disclosure. Participants adopted gendered embodied practices, including altered consumption methods or injecting in less visible areas, to conceal their use from peers and at times, their partners. To resist harms associated with involuntary disclosure, participants often used alone in SRAs or in public spaces. While such practices allowed women to exert agency within constraining systems, they concurrently heightened overdose risk. Findings demonstrate how women engaged in everyday acts of resistance through embodied drug use practices, which increased their agency but elevated overdose risk. Implementing gender-specific programs that increase bodily agency and control (e.g. low-threshold services for personal care, women-focused harm reduction support) are needed to reduce risk of overdose for WWUD.