In the Journals

In The Journals – August 2021 Part 2

Social Science & Medicine

Turning suffering into side effects: Responses to HPV vaccination in Colombia (open access)
Maurizia Mezza, Stuart Blume

How do unpleasant post-vaccination symptoms become recognized as vaccine ‘side effects’? In this paper, we argue that it is not necessarily the logical outcome of scientific verification that it is said to be. The paper draws on an ethnographic study carried out in a small town, El Carmen de Bolivar, on Colombia’s Caribbean coast from February through May 2019. In 2014, hundreds of girls in the town reported a range of mysterious symptoms following mass vaccination against the Human Papilloma Virus(HPV). Denying the girls’ insistence that their symptoms were due to the vaccine, the official diagnosis was Mass Psychogenic Illness. Comparing these events with studies of controversial responses to other vaccines, we suggest that the pathway from post-vaccination symptoms to ‘side effects’ is cognitively and socially complex. In particular, it is context-dependent. Drawing on research in medical anthropology, sociology and STS, we argue that the official diagnosis was influenced by the subjects’ marginal status; by a projection of the region’s violent past onto individual inhabitants; by health professionals’ commitment to a restricted notion of evidence (devaluing patients’ own accounts); and by an institutional inability or unwillingness to stand against ‘global consensus’, which deems HPV safe.

“Old people problems”, uncertainty and legitimacy: Challenges with diagnosing Parkinson’s disease in Kenya (open access)
Natasha Fothergill-Misbah, Richard Walker, Judith Kwasa, Juzar Hooker, Kate Hampshire

Very little is known about the experience of people living with Parkinson’s disease (PD) in low- and middle-income countries, such as those in sub-Saharan Africa. The number of specialists in the region is low and awareness is limited among the population and healthcare professionals. Drawing on ten months of ethnographic fieldwork in urban and rural Kenya with 55 people living with PD (PwP), 23 family members and 22 healthcare professionals from public and private clinics, we set out to understand the experience of diagnosis among PwP in Kenya. The diagnostic journeys of our study participants were typically long, convoluted and confusing. Lack of relevant information, combined with comorbidities and expectations about ‘normal’ ageing, often conspired to delay interactions with health services for many. There often followed an extended period of diagnostic uncertainty, misdiagnosis and even ‘undiagnosis’, where a diagnostic decision was reversed. Following diagnosis, patients continued to lack information about their condition and prognosis, making it difficult for friends, family members and others to understand what was happening to them. We suggest that awareness of PD and its symptoms needs to improve among the general population and healthcare professionals. However, diagnosis is only the first step, and needs to be accompanied by better access to information, affordable treatment and support.

The power of potential: Assisted reproduction and the counterstories of women who discontinue fertility treatment (open access)
Andrea Carson, Fiona Webster, Jessica Polzer, Sandra Bamford

Despite their low and inconsistent rates of success, assisted reproductive technologies (ARTs) are presented by fertility clinics and constructed in media and popular culture as an effective treatment for infertility. The ways in which such technologies medicalize women’s health and bodies have been well documented by social scientists and feminist health researchers. However, little is known about the struggles women face in cases of “failure”; that is, when ART does not achieve its purported potential to assist women in their attempts to conceive and have the desired outcomes of conception and birth. Using a post-structural feminist interpretive framework combined with a narrative methodology, this paper critically examines the ways in which social and cultural narratives about gender and biotechnology shape women’s accounts of discontinuing ART. Thirty-six interviews were conducted with twenty-two women across Canada who were at various stages of discontinuation and who utilized a variety of treatment types. Three inter-related narrative themes were developed to categorize the stories of struggle: (i) a growing desperation to be pregnant; (ii) confronting paternalistic medical expectations; and (iii) internalizing and resisting blame for treatment failures. These themes highlight both the explicit and subtle ways in which restrictive social and cultural narratives about womanhood and motherhood were perpetuated in clinical interactions, which ultimately made ending treatment more difficult. Our analysis illustrates how women navigated and resisted such narratives, through pausing or ending treatment despite provider recommendations and clinical messages. We suggest that fertility providers critically reflect on the potentially harmful language used during interactions with patients and recommend that discontinuation discussions become a recurring, normalized component of treatment protocols and patient-provider conversations so that women feel better supported to end treatment when they believe it is financially, emotionally, and physically beneficial for them to do so.

Ensuring the ordinary: Politics and public service in municipal primary care in India
Radhika Gore

This paper examines the political embeddedness of public-sector primary care in urban India. The low quality of urban healthcare in many low- and middle-income countries is well documented. But there is relatively little analysis showing how the politics of urban healthcare delivery contribute to quality shortfalls. This study integrates urban and political theory and draws on ethnographic fieldwork in municipal government-run primary care clinics in Pune, India. I conceptualize Pune’s municipal doctors as street-level bureaucrats: frontline state agents charged with delivering public services, who regularly confront conflicts between their mandate and its realization in practice. I observe how the municipal doctors experience and respond to these conflicts; delineate the historical design of the municipal institutions in which they operate; and interview doctors, nurses, nonclinical staff, administrators, and elected officials, who collectively shape primary care delivery in municipal clinics. My findings show how the doctors’ work is characterized by routine departures from public service ideals. The departures stem from local electoral politics (politicians’ patronage and clientelistic relations with municipal employees and patients) and weak administrative capacity (misuse and incompetent planning of public resources). The doctors are compelled to follow extra-policy directives, meaning instructions that have little to do with healthcare goals and that emphasize the political utility rather than medical purpose of their work. In response, the doctors circumscribe their clinical practice. They aim, as one doctor put it, only to “ensure the ordinary,” or to sustain a deficient status quo. In these conditions, improving quality of care requires not just behavioral interventions targeted at doctors. It requires normative, social, and organizational shifts in public service planning and delivery so that doctors are positioned – materially and affectively – to meet urban healthcare challenges in low-resource contexts.

Social Studies of Science

Defending ‘snake oil’: The preservation of contentious knowledge and practices
Catherine D Tan

How does belief in controversial ideas persist? I study a community of parents and practitioners who contend that autism spectrum disorder is caused by harmful environmental exposures – notably, early childhood vaccinations – and that there are worthwhile alternative or experimental treatments. Despite objections from dominant experts, these actors maintain their disputed ideas. This study identifies a set of strategies that help maintain internal legitimacy. In particular, actors protect internal legitimacy through professional alignment and contrastive boundary work. Professional alignment mobilizes resemblances to conventional counterparts (i.e. mainstream doctors) to defend unorthodox practices. Meanwhile, contrastive boundary-work performances convey the defining values and strengths that actors associate with their knowledge community and concomitantly, the weaknesses they ascribe to competing groups. Through these activities, actors respond to perceived threats and construct a distinct group identity anchored in shared knowledge, ways of knowing and practice.

Strategies of stratification: Regulating market access in the era of personalized medicine
Sarah Wadmann, Amalie Martinus Hauge

Personalized medicine raises the stakes of pharmaceutical market regulation. Drawing on pragmatist valuation studies and science and technology studies literature on personalized medicine and pharmaceutical markets, this article demonstrates how complex negotiations about the value of a pharmaceutical can constitute a market in various ways, while also shaping the concerned patient populations. Tracing the path of a pharmacogenetic treatment, Spinraza, from its approval by the European Medicines Agency to its adoption in the publicly funded Danish healthcare system, we show how the market was formatted through particular stratifications of the patient population. We conceptualize these seemingly technical moves as strategies of stratification, that is, the application of techniques to assemble and divide data – and what data are meant to represent – into groups delineated by certain characteristics. We argue that stakeholders’ use of strategies of stratification has important implications not only for market access, but also for the delineation of diseases and patient populations. Hence, it is crucial to make intelligible the mutual constitution of pharmaceutical markets and patient populations and the political efforts of delineating and connecting the two.

Sociology of Health and Illness

Family imaginaries in the disclosure of a blood-borne virus (open access)
Anthony K J Smith, Asha Persson, Kerryn Drysdale, Joanne Bryant, kylie valentine, Jack Wallace, Myra Hamilton, Rebecca M Gray, Christy E Newman

Contemporary sociological work has emphasised that family is not static, but actively shaped by ideas of who and what makes family. Disclosure of an illness, including diagnosis of stigmatised infections such as HIV, hepatitis B virus and hepatitis C virus, can change the dynamics of family relationships. This paper draws on 61 qualitative semi-structured interviews conducted between 2017 and 2019 with people in Australia with one or more of these blood-borne viruses (BBVs) and their family members, to understand the experiences of serodiscordant (mixed viral status) families. Through a thematic analysis, we explore the family imaginaries that participants evoked when describing their disclosure practices in relation to (self-defined) family members, revealing how some participants disclosed in ways that enabled them to shape their family, to maintain boundaries between self and family or to protect family from distress. Participants’ accounts of disclosure to family revealed imaginaries of family as a precious web of connections to be nurtured or protected, but also as sites of ambivalent belonging and complex history. We conclude that BBV disclosure practices within families reveal important ideas about families that are imagined in response to the threat of loss, change and stigma.

Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process (open access)
Marjolein Lottede Boer

In healthcare settings, patient participation is increasingly adopted as a possible remedy to ill people suffering from ‘epistemic injustices’ – that is to their unfair harming as knowers. In exploring and interpreting patient participation discourses within the 2013–2018 Dutch Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Health Council advisory process, this paper assesses the epistemological emancipatory value of this participatory practice. It reveals that in the analysed case, patient representatives predominantly offer biomedical knowledge about ME/CFS. They frame this condition as primarily somatic, and accordingly, perceive appropriate diagnostic criteria, research avenues and treatment options as quantifiable, objectifiable and explicitly non-psychogenic. This paper argues that such a dominant biomedical patient participatory practice is ambiguous in terms of its ability to correct epistemic injustices towards ill people. Biomedicalized patient participation may enhance people’s credibility and their ability to make sense of their illness, but it may also undermine their valid position within participatory practices as well as lead to (sustaining) biased and reductive ideas about who ill people are and what kind of knowledge they hold. The final section of this paper offers a brief reflection on how to navigate such biomedicalized participatory practices in order to attain more emancipatory ones.

Negotiating identities of ‘responsible drinking’: Exploring accounts of alcohol consumption of working mothers in their early parenting period (open access)
Serena Vicario, Marian Peacock, Penny Buykx, Petra Sylvia Meier, Paul Bissell

Mothers’ alcohol consumption has often been portrayed as problematic: firstly, because of the effects of alcohol on the foetus, and secondly, because of the association between motherhood and morality. Refracted through the disciplinary lens of public health, mothers’ alcohol consumption has been the target of numerous messages and discourses designed to monitor and regulate women’s bodies and reproductive health. This study explores how mothers negotiated this dilemmatic terrain, drawing on accounts of drinking practices of women in paid work in the early parenting period living in Northern England in 2017–2018. Almost all of the participants reported alcohol abstention during pregnancy and the postpartum period and referred to low-risk drinking practices. A feature of their accounts was appearing knowledgeable and familiar with public health messages, with participants often deploying ‘othering’, and linguistic expressions seen in public health advice. Here, we conceptualise these as Assumed Shared Alcohol Narratives (ASANs). ASANs, we argue, allowed participants to present themselves as morally legitimate parents and drinkers, with a strong awareness of risk discourses which protected the self from potential attacks of irresponsible behaviour. As such, these narratives can be viewed as neoliberal narratives, contributing to the shaping of highly responsible and self-regulating subjectivities.

Material Citizenship: An ethnographic study exploring object–person relations in the context of people with dementia in care homes (open access)
Kellyn Lee, Ruth Bartlett

Materiality has become an increasingly important topic in sociological studies of health care. How objects support the identity of people with dementia in care homes is an emerging area. While early research has tended to focus on sentimental or cherished items (such as photographs or keepsakes), the present study focused on functional objects (such as curling tongs or a hairdryer) as a mechanism to actualise citizenship. This article presents findings from an ethnographic study into the everyday experiences of people with dementia living in a residential care home in southern England. Drawing on a framework analysis of observations of daily life, object-elicitation interviews with residents, in-depth interviews with staff and relatives and documentary research, the findings demonstrate that object relations are a critical but overlooked site for citizenship. Residents are rarely involved in decision-making relating to their personal possessions, lack control over objects and are often discouraged from material interactions important to the maintenance and cultivation of identity. We introduce a new concept ‘material citizenship’ to advance thinking and practice in this area and argue that it is valuable for care practices to combine a material citizenship approach with existing care practices; thus, elevating the importance of object–person relations in dementia care.

Desynchronised times? Chronobiology, (bio)medicalisation and the rhythms of life itself
Simon J. Williams, Robert Meadows, Catherine M. Coveney

This paper takes a critical look at the role of chronobiology in society today, with particular reference to its entanglements with health and medicine and whether or not this amounts to the (bio)medicalisation of our bodily rhythms. What we have here, we show, is a complex unfolding storyline, within and beyond medicine. On the one hand, the promises and problems of these circadian, infradian and ultradian rhythms for our health and well-being are now increasingly emphasised. On the other hand, a variety of new rhythmic interventions and forms of governance are now emerging within and beyond medicine, from chronotherapies and chronopharmacology to biocompatible school and work schedules, and from chronodiets to the optimisation of all we do according to our ‘chronotypes’. Conceptualising these developments, we suggest challenges us to think within and beyond medicalisation to wider processes of biomedicalisation and the biopolitics of our body clocks: a vital new strand of chronopolitics today indeed which implicates us all in sickness and in health as the very embodiment of these rhythms of life itself. The paper concludes with a call for further research on these complex unfolding relations between chronobiology, health and society in these desynchronised times of ours.

By Megh Marathe

Megh Marathe is a PhD candidate at the University of Michigan studying the clinical diagnosis and lived experience of epilepsy. Megh conducts ethnographic fieldwork at a large midwestern hospital, observing trainee neurologists learn to diagnose seizures using electroencephalography (EEG). As a critical disability and science studies scholar ready to critique the neurologists’ every move, Megh found careful, hard-working, and highly-trained doctors working individually towards “zero seizures, zero side effects” and as a discipline “towards a world without epilepsy” in hopeful service of patient-centered care (goals that are often shared by people with epilepsy). As a person with epilepsy trained in computer science and engineering, however, the EEG itself — a device with solely confirmatory diagnostic power, porous to artifacts of social and environmental origin, and originally developed to detect parapsychological phenomena, but which instead helped strengthen the biological pathology of epilepsy — and its active use and infrastructural status in clinical neurology (and beyond) both fascinates and frightens Megh. Their work has been presented at annual meetings of the Society for the Social Studies of Science (4S), Society for Disability Studies, Canadian Disability Studies Association, and Nordic Network on Disability Research; and published in social science and human-computer interaction venues. Megh is supported by a dissertation grant from Microsoft Research and a public scholarship grant from the University of Michigan. Twitter: @marathe_megh