Social scientists have proposed various theories as to when, why, and how people come to seek medical care for multiple conditions. Yet, there is still little empirical research to illustrate the pathways into and out of care, especially for chronic illness. This article contributes to this body of work by exploring individuals’ reasons for delaying and seeking care for obstructive sleep apnea, which despite being the most diagnosed sleep disorder, has been largely neglected by social scientists. Drawing upon in-depth interviews with 65 Jewish-Israeli obstructive sleep apnea patients, this study shows how intersections of gender, family, and morality shape and are shaped by care-seeking behavior. The analysis reveals that married men claim they do not do health, thereby reaffirming their masculinity, but they maintain moral status because their wives do much of their illness work for them. Unmarried men, however, claim to be more vigilant in their pursuit of health and present it as one of their responsibilities. Women acknowledge they have the double burden of protecting their own health as well as that of their loved ones, and often feel that they are incapable of meeting these social expectations. However, men and women are able to maintain moral status by explaining their neglect of health as resulting from their attempts to care for significant others. Finally, married women differ from men and unmarried women in their motivations for seeking care. In keeping with their gender roles, married women emphasize disturbance to others whereas men stress disturbance to self.
Previous research concerning bilingual people with a dementia disease has mainly focused on the importance of sharing a spoken language with caregivers. While acknowledging this, this article addresses the multidimensional character of communication and interaction. As using spoken language is made difficult as a consequence of the dementia disease, this multidimensionality becomes particularly important. The article is based on a qualitative analysis of ethnographic fieldwork at a dementia care facility. It presents ethnographic examples of different communicative forms, with particular focus on bilingual interactions. Interaction is understood as a collective and collaborative activity. The text finds that a shared spoken language is advantageous, but is not the only source of, nor a guarantee for, creating common ground and understanding. Communicative resources other than spoken language are for example body language, embodiment, artefacts and time. Furthermore, forms of communication are not static but develop, change and are created over time. Ability to communicate is thus not something that one has or has not, but is situationally and collaboratively created. To facilitate this, time and familiarity are central resources, and the results indicate the importance of continuity in interpersonal relations.
In recent decades, the ‘tenacious assumptions’ of biomedicine regarding the neutrality and universality of its knowledge claims have been significantly challenged by the growth of new collaborative and patient-focused models of Healthcare delivery. In this article, we discuss and critically reflect upon one such alternative Healthcare model developed at the University of Gothenburg Centre for Person-Centred Care in Sweden. This centre uses three clinical routines of narrative, partnership and documentation to provide Healthcare to people recognized as unique individuals rather than patients. Person-centred care in Gothenburg and more broadly is based on the assumption that a person is independently capable of reasoning and verbal expression and willing to provide clear and genuine narratives and cooperate with Healthcare professionals. However, we argue that by emphasizing individual capabilities of reasoning and verbal expression, an unnecessarily limited conception of personhood risks being imposed on these routines. Drawing upon semi-structured interviews with researchers in three very different Gothenburg Centre for Person-Centred Care research projects – about healthy ageing in migrant communities, neurogenic communication disorders, and psychosis – we highlight that how persons are recognized as unique and capable varies significantly in practice across different Healthcare settings. Thus, we assert that person-centred care’s own potentially tenacious assumptions about the attributes of personhood risk distracting attention away from the variety of creative ways that professionals and persons promisingly find for translating the ideal of person-centred care into practice.
Associated with social and individual harm, loss of control and destructive behaviour, addiction is widely considered to be a major social problem. Most models of addiction, including the influential disease model, rely on the volition/compulsion binary, conceptualising addiction as a disorder of compulsion. In order to interrogate this prevailing view, this article draws on qualitative data from interviews with people who describe themselves as having an alcohol or other drug ‘addiction’, ‘dependence’ or ‘habit’. Applying the concept of ‘diffraction’ elaborated by science studies scholar Karen Barad, we examine the process of ‘addicting’, or the various ways in which addiction is constituted, in accounts of daily life with regular alcohol and other drug use. Our analysis suggests not only that personal accounts of addiction exceed the absolute opposition of volition/compulsion but also that the polarising assumptions of existing addicting discourses produce many of the negative effects typically attributed to the ‘disease of addiction’.
This article reports the results of a Foucauldian-informed discourse analysis exploring representations of fatness embedded within an empirically based psychological treatment manual for binge eating disorder, a condition characterized by overvaluation of weight and shape. Analyses indicate that the manual prioritizes weight loss with relatively less emphasis placed on treating the diagnostic symptoms and underlying mechanisms of binge eating disorder. We raise critical concerns about these observations and link our findings to mainstream psychology’s adoption of the medical framing of fatness as obesity within the "gold standard" approach to intervention. We recommend that psychology as a discipline abandons the weight loss imperative associated with binge eating disorder and fat bodies. We recommend that practitioners locate the problem of fat shame in society as opposed to the individual person’s body and provide individuals with tools to identify and resist fat stigma and oppression, rather than provide them with tools to reshape their bodies.
This article explores how people with progressive multiple sclerosis give meaning to their experiences. It builds upon the self-management literature, which has captured the tension between the desire for retaining normalcy and the increasing burden of self-management associated with chronic disease progression. This repeat interview study is empirically grounded in 28 interviews with 14 people with progressive multiple sclerosis. We identified gender differences in diagnosis-seeking which impacted subsequent sense-making. Male respondents found a diagnosis of multiple sclerosis difficult to come to terms with, and an enduring sense of loss or anger could inhibit further sense-making. A diagnosis of multiple sclerosis was more difficult to obtain for women respondents, and any sense of certainty that diagnosis provided framed their subsequent sense-making strategies. The complex sequelae of multiple sclerosis require that self-management strategies are both contextual and timely, although even the most accomplished self-managers can lose their sense of self with neurodegeneration. Disease progression can be associated with suicidal ideation, suggesting the need for greater dialogue to ensure that people with multiple sclerosis are adequately supported to fulfil their quality of life at all stages of neurodegeneration. These lay perspectives emphasise the articulation of affect rather than the rendering of a medical diagnosis, although diagnosis may provide a degree of certainty in the short term. The ethos of self-management ensures people attempt to retain their sense of ‘normality’ and existent social roles for as long as possible, but this ethos can negate both one’s ability to self-manage and the management of self.
Standards expected by doctors’ regulatory bodies in respect of the process of consent to treatment have arguably sought to restructure the nature of the doctor–patient relationship from one of the paternalism to that of shared decision-making. Yet, few studies have explored empirically, from patients’ perspectives, the extent to which the process of consent to treatment enables or disables patients’ participation in medical decision-making. Our article examines patients’ attitudes towards the consent process, exploring how and why these attitudes influence patients’ active participation in decision-making and considering possible consequent medico-legal issues. Data were collected longitudinally using semi-structured interviews and field observations involving 35 patients and 19 of their caregivers, in an English hospital between February and November 2014. These indicate that generally patients defer to the doctor in respect of treatment decision-making. Although most patients and their caregivers wanted detailed information and discussion, they did not necessarily expect that this would be provided. Furthermore, patients perceived that signing the consent form was an obligatory routine principally to protect doctors from legal action should something go wrong. Our study suggests that patients’ predominantly paternalistic perceptions of the consent process can not only undermine attempts by doctors to involve them in decision-making but, as patients are now considered in law as informed actors, their perceptions of the consent form as not being in their interests could be a self-fulfilling prophecy if signing is undertaken without due consideration to the content.
This article examines how the medicalization of obesity validates the use of bariatric surgery to treat obesity in the United States and how expansions in access to bariatric surgery normalize surgical procedures as disease treatment and prevention tools. Building on this discussion, the article poses two questions for population health regarding health technology: (1) to what extent does bariatric surgery treat obesity in the United States while diverting attention away from the ultimate drivers of the epidemic and (2) to what extent does bariatric surgery improve outcomes for some groups in the US population while simultaneously generating disparities? We conduct a brief, historical analysis of the American Medical Association’s decision to reclassify obesity as a disease through internal documents, peer-reviewed expert reports, and major media coverage. We use medicalization theory to show how this decision by the American Medical Association channels increased focus on obesity into the realm of medical intervention, particularly bariatric surgery, and use this evidence to review research trends on bariatric surgery. We propose research questions that investigate the population health dimensions of bariatric surgery in the United States and note key areas of future research. Our objective is to generate a discourse that considers bariatric surgery beyond the medical realm to better understand how technological interventions might work collectively with population-level obesity prevention efforts and how, in turn, population health approaches may improve bariatric surgery outcomes.
The moral turn within sociology suggests that we need to be attentive to values and have a rapprochement with philosophy. The study of illness narratives is one area of sociology that has consistently addressed itself to moral domains but has tended to focus on stories of living with genetic or chronic illness per se rather than liminal states such as genetic traits. This article takes the case of genetic carriers within racialized minority groups, namely, those with sickle cell or thalassaemia trait, and takes seriously the notion that their narratives are ethical practices. In line with the work of Paul Ricoeur, such storied practices are found to link embodiment, social relationships with significant others and wider socio-cultural and socio-political relations. At the same time, such practices are about embodying values. These narratives may be considered as practices that re-fuse what genetic counselling has de-fused, in order to make sense of a life in its entirety and to strive ethically and collectively towards preferred social realities.
General practitioners have implicitly been given responsibility for guiding men’s decisions about prostate-specific antigen–based screening for prostate cancer, but patients’ expectations of the bounds of this responsibility remain unclear. We sought to explore how well-informed members of the public allocate responsibilities in prostate-specific antigen screening decision-making. In 2014, we convened two Community juries in Sydney, Australia, to address questions related to the content and timing of information provision and respective roles of patients and general practitioners in screening decisions. Participants in the first jury were of mixed gender and of all ages (n = 15); the participants in the second jury were all male and of screening age (n = 12). Both juries were presented with balanced factual evidence on the harms and benefits of prostate-specific antigen screening and expert perspectives on ethico-legal aspects of consent in medical practice. In their deliberations, jurors agreed that general practitioners should take responsibility for informing men of the options, risks and benefits of prostate-specific antigen testing, but arrived at different positions on whether or not general practitioners should also guide screening decisions. Jurors also disagreed on how much and when general practitioners should provide detailed information about biopsies and treatments. These responses suggest that for prostate-specific antigen testing, there is a public expectation that both the allocation of responsibility between general practitioners and their male patients, and the level of information provided will be tailored to individual men. In the presence of expert uncertainty, a well-informed public may have reason to embrace or resist shared decision-making processes.
Despite the majority of needle–syringe sharing occurring between sexual partners, the intimate partnerships of people who inject drugs have been largely overlooked as key sites of both hepatitis C virus prevention and transmission, and risk management more generally. Drawing on interviews with 34 couples living in inner-city Australia, this article focuses on participants’ accounts of ‘sharing’. While health promotion discourses and conventional epidemiology have tended to interpret the practice of sharing (like the absence of condom use) in terms of ‘noncompliance’, we are interested in participants’ socially and relationally situated ‘rationalities’. Focussing on participants’ lived experiences of partnership, we endeavour to make sense of risk and safety as the participants themselves do.How did these couples engage with biomedical knowledge around hepatitis C virus and incorporate it into their everyday lives and practices? Revisiting and refashioning the concept of ‘negotiated safety’ from its origins in gay men’s HIV prevention practice, we explore participants’ risk and safety practices in relation to multiple and alternative framings, including those which resist or challenge mainstream epidemiological or health promotion positions. Participant accounts revealed the extent to which negotiating safety was a complex and at times contradictory process, involving the balancing or prioritising of multifarious, often competing, risks. We argue that our positioning of participants’ partnerships as the primary unit of analysis represents a novel and instructive way of thinking about not only hepatitis C virus transmission and prevention, but the complexities and contradictions of risk production and its negotiation more broadly.
Although neuroimaging is currently not a component of the diagnostic process for autism spectrum disorders, some scientists hail these technologies for their promise to one day replace behaviorally based psychiatric diagnostic techniques. This article examines how psychiatrists understand the potential use of neuroimaging technologies within the context of clinical practice. Drawing on 10 semi-structured interviews with child and adolescent psychiatrists, I describe the hope and doubt that comprise their discourse of ambivalence. This analysis demonstrates that the uses and meanings of neuroimaging technologies are rearticulated in ongoing debates in the field of psychiatry regarding the role of the biopsychiatric model in the diagnosis and treatment of mental illness. This study highlights issues surrounding the perceived biopsychiatric focus of neuroimaging technologies within clinical practice, concerns regarding misdirected research attention, and the ways in which understandings of future utility mediate perceptions of technological utility.
Following restrictions on smoking in vehicles carrying children in several countries, legislation to safeguard minors from second-hand smoke exposure in vehicles is under-consideration or has been implemented across the United Kingdom. This article presents the first investigation into social constructions of children, smokers and smoking parents in newsprint media and coverage of debates about protecting children from exposure to second-hand smoke in vehicles. Using Scotland as an example, articles on children’s exposure to second-hand smoke published between 1 January 2004 and 16 February 2014 in three Scottish newspapers were identified using Nexis UK. In all, 131 articles were thematically coded and analysed. Children were portrayed as vulnerable and requiring protection, with few articles highlighting children’s ability to voice concerns about the dangers of smoking. Smokers and smoking parents were mainly portrayed in a factual manner, but also frequently as irresponsible and, in some cases, intentionally imposing harm. Individual smokers were blamed for their recklessness, with only a small number of articles mentioning the need to assist smokers in quitting. Supporters of legislation focused on corresponding discourse, whereas critics directed debates towards established arguments against policy, including individual freedom, privacy and problems of enforcement. Focusing on children’s vulnerability to second-hand smoke might have increased support for legislation but risked a side effect of smokers being stigmatised. The media and supporters of public health policy are encouraged to consider appropriate approaches to raise awareness of the health harms of second-hand smoke to children while avoiding unintended stigmatisation of those in which they want to encourage behaviour change.
Relatively little research on infertility focuses exclusively or significantly on men’s experiences, particularly in relation to emotional aspects. Evidence that does exist around male infertility suggests that it is a distressing experience for men, due to stigma, threats to masculinity and the perceived need to suppress emotions, and that men and women experience infertility differently. Using thematic analysis, this article examines the online emoting of men in relation to infertility via forum posts from a men-only infertility discussion board. It was noted that men ‘talked’ to each other about the emotional burdens of infertility, personal coping strategies and relationships with others. Three major themes were identified following in-depth analysis: ‘the emotional rollercoaster’, ‘the tyranny of infertility’ and ‘infertility paranoia’. This article then offers insights into how men experience infertility emotionally, negotiate the emotional challenges involved (especially pertaining to diagnosis, treatment outcomes and their intimate relationships) and how they share (and find value in doing so) with other men the lived experience of infertility.
Pre-exposure prophylaxis is a novel biomedical HIV prevention option for individuals at high risk of HIV acquisition. Although pre-exposure prophylaxis has yielded encouraging results in various clinical trials, opponents argue that pre-exposure prophylaxis poses a number of risks to human health and to sexually transmitted infection prevention efforts. Using qualitative thematic analysis and social representation theory, this article explores coverage of pre-exposure prophylaxis in the UK print media between 2008 and 2015 in order to chart the emerging social representations of this novel HIV prevention strategy. The analysis revealed two competing social representations of pre-exposure prophylaxis: (1) as a positive development in the ‘battle’ against HIV (the hope representation) and (2) as a medical, social and psychological setback in this battle, particularly for gay/bisexual men (the risk representation). These social representations map onto the themes of pre-exposure prophylaxis as a superlatively positive development; pre-exposure prophylaxis as a weapon in the battle against HIV/AIDS; and risk, uncertainty and fear in relation to pre-exposure prophylaxis. The hope representation focuses on taking (individual and collective) responsibility, while the risk representation focuses on attributing (individual and collective) blame. The implications for policy and practice are discussed.
By featuring news articles highlighting certain aspects of obesity and backgrounding others, the media can frame these aspects as especially applicable to how obesity should be understood and addressed. Despite the highest rates in Europe, news reports from Britain and Germany have come under little scholarly scrutiny. In this article, we explore frames and their frequency of use in British and German online newspapers. Our findings reveal a dominant cross-national framing of obesity in terms of ‘self-control’, which places a more pronounced emphasis on individual responsibility than demonstrated by earlier studies and may contribute to a culture of weight bias and stigma. The results also reveal evidence for cross-national efforts to challenge this individualising framing with counter-frames of ‘acceptance’ and ‘coming out’. We argue that this is a positive development, which demonstrates the potential of media frames to function not only as possible contributors to weight bias and stigma but also as mechanisms for countering entrenched social conceptions of obesity.
Mental health care for older people is a significant and growing issue in Australia and internationally. This article describes how older people’s mental health is governed through policy discourse by examining Australian Commonwealth and South Australian State government policy documents, and commentaries from professional groups, advocacy groups and non-governmental organisations. Documents published between 2009 and 2014 were analysed using a governmentality approach, informed by Foucault. Discourses of ‘risk’, ‘ageing as decline/dependence’ and ‘healthy ageing’ were identified. Through these discourses, different neo-liberal governmental strategies are applied to ‘target’ groups according to varying risk judgements. Three policy approaches were identified where older people are (1) absent from policy, (2) governed as responsible, active citizens or (3) governed as passive recipients of health care. This fragmented policy response to older people’s mental health reflects fragmentation in the Australian policy environment. It constructs an ambiguous place for older people within neo-liberal governmental rationality, with significant effects on the health system, older people and their carers.
Public and patient involvement (PPI) in health care may refer to many different processes, ranging from participating in decision-making about one’s own care to participating in health services research, health policy development, or organizational reforms. Across these many forms of public and patient involvement, the conceptual and theoretical underpinnings remain poorly articulated. Instead, most public and patient involvement programs rely on policy initiatives as their conceptual frameworks. This lack of conceptual clarity participates in dilemmas of program design, implementation, and evaluation. This study contributes to the development of theoretical understandings of public and patient involvement. In particular, we focus on the deployment of patient engagement programs within health service organizations. To develop a deeper understanding of the conceptual underpinnings of these programs, we examined the concept of "the patient perspective" as used by patient engagement practitioners and participants. Specifically, we focused on the way this phrase was used in the singular: "the" patient perspective or "the" patient voice. From qualitative analysis of interviews with 20 patient advisers and 6 staff members within a large urban health network in Canada, we argue that "the patient perspective" is referred to as a particular kind of situated knowledge, specifically an embodied knowledge of vulnerability. We draw parallels between this logic of patient perspective and the logic of early feminist theory, including the concepts of standpoint theory and strong objectivity. We suggest that champions of patient engagement may learn much from the way feminist theorists have constructed their arguments and addressed critique.
This article moves beyond previous attempts to understand health problems in the lives of professional lorry drivers by placing the study of drivers’ health in a wider social and cultural context. A combination of methods including focus groups, interviews and observations were used to collect data from a group of 24 lorry drivers working at a large transport company in the United Kingdom. Employing a critical discourse analysis, we identified the dominant discourses and subject positions shaping the formation of drivers’ health and lifestyle choices. This analysis was systematically combined with an exploration of the gendered ways in which an almost exclusively male workforce talked about health. Findings revealed that drivers were constituted within a neoliberal economic discourse, which is reflective of the broader social structure, and which partly restricted drivers’ opportunities for healthy living. Concurrently, drivers adopted the subject position of ‘average man’ as a way of defending their personal and masculine status in regards to health and to justify jettisoning approaches to healthy living that were deemed too extreme or irrational in the face of the constraints of their working lives. Suggestions for driver health promotion include refocusing on the social and cultural – rather than individual – underpinnings of driver health issues and a move away from moralistic approaches to health promotion.
The aim of our study was to better understand processes of ongoing smoking or smoking cessation (quitting) following hospitalisation for myocardial infarction or unstable angina (acute cardiac syndromes). In-depth interviews were used to elicit participants’ stories about ongoing smoking and quitting. In total, 18 interviews with smokers and 14 interviews with ex-smokers were analysed. Our findings illustrate the complex social nature of smoking practices including cessation. We found that smoking cessation following hospitalisation for acute cardiac syndromes is to some extent a performative act linked to ‘doing health’ and claiming a new identity, that of a virtuous ex-smoker in the hope that this will prevent further illness. For some ex-smokers hospitalisation had facilitated this shift, acting as a rite of passage and disrupting un-contemplated habits. Those participants who continued to smoke had often considered quitting or had even stopped smoking for a short period of time after hospitalisation; however, they did not undergo the identity shift described by ex-smokers and smoking remained firmly entrenched in their sense of self and the pattern of their daily lives. The ongoing smokers described feeling ashamed and stigmatised because of their smoking and felt that quitting was impossible for them. Our study provides an entry point into the smokers’ world at a time when their smoking has become problematised and highly visible due to their illness and when smoking cessation or continuance carries much higher stakes and more immediate consequences than might ordinarily be the case.
This article focuses on contemporary responses to public health messages in Denmark, a country whose system of social welfare is, like that of the United Kingdom and the rest of Europe, undergoing increasing levels of marketization and privatization. Drawing primarily upon Robert Crawford’s analysis of healthism as a neoliberal project, the aim of this article is to develop critical understandings of how individuals respond both bodily and emotionally to ideologies of health and the body in the context of a changing marketplace for the consumption of health and its messages. This article will analyze perceptions and practices of health in Denmark. The findings will then be discussed in relation to dimensions inspired by the work of Crawford, who regards "health" as a "super-value," an outcome of individual security strategies, and mode of citizenship in the marketplace. The article argues that Crawford’s discussion does not fully capture the ways in which people use their bodies to valorize themselves. First, the perception of the state is perceived as being aligned with commercial interests. As a consequence, neither state- nor market-based (i.e. commercial health product and service providers) health advice is fully trusted. Instead, the opinions of non-market actors such as peers and friends as well as of alternative practitioners that are considered outside the market since they do not represent corporate interests become more attractive among citizen-consumers who are concerned about their health. The article concludes with a discussion of the implications of our findings for theorization of public health and health policy.
In Canada, it is young, rural-based men who are at the greatest risk of suicide. While there is no consensus on the reasons for this, evidence points to contextual social factors including isolation, lack of confidential services, and pressure to uphold restrictive norms of rural masculinity. In this article, we share findings drawn from an instrumental photovoice case study to distil factors contributing to the suicide of a young, Canadian, rural-based man. Integrating photovoice methods and in-depth qualitative, we conducted interviews with seven family members and close friends of the deceased. The interviews and image data were analyzed using constant comparative methods to discern themes related to participants’ reflections on and perceptions about rural male suicide. Three inductively derived themes, "Missing the signs," "Living up to his public image," and "Down in Rural Canada," reflect the challenges that survivors and young rural men can experience in attempting to be comply with restrictive dominant ideals of masculinity. We conclude that community-based suicide prevention efforts would benefit from gender-sensitive and place-specific approaches to advancing men’s mental health by making tangibly available and affirming an array of masculinities to foster the well-being of young, rural-based men.
For too long, medical/psychiatric and psychological studies, with focus on emotional sensitivity, personality traits, and correlation with psychopathology, have dominated research on self-injuring acts. The phenomenon thus has been defined as a predominantly medical issue. However, a large body of community prevalence studies show self-injuring acts to be a common phenomenon in society, and most of those who self-injure are unknown in psychiatric or other clinical settings. This article describes and analyzes the medicalization of self-injuring acts and argues a need to move research on self-injuring acts out of the medical paradigm. There is a need to explicitly explore the impact of social, cultural, structural, and gendered factors surrounding and influencing self-injuring acts. A non-medical approach, beyond the limits of the medical perspective, would feed research forward and create a more nuanced view on this widespread social phenomenon.
Acupuncture is the most widespread practice of Traditional Chinese Medicine in the Western world. This confers special relevance to the experiences and circumstances of life to explain the health-illness process. Recent research has reported an increasing interest of Western health professionals in its practice. The aim of this study was to map and understand the motivation of health professionals to study and practise acupuncture in Spain. A total of 27 in-depth interviews were conducted with Spanish health professionals trained in acupuncture. Participants were selected following a theoretical sampling. Grounded theory dimensional analysis guided this research in order to obtain a theoretical explanation of the motivations of health professionals to study and practise acupuncture. Their motivations were focused on six categories: humanisation of medicine, acquiring additional therapeutic resources, efficacy and far-reaching healing potential of acupuncture, attraction to acupuncture philosophy, external influences (other professionals and relevant sources of information) and work-related motivation. Our results show that health professionals were attracted to acupuncture because of the Traditional Chinese Medicine worldview (a philosophical approach) and therapeutic benefits of acupuncture (a practical approach). Acupuncture offers the possibility to improve the healthcare assistance by transcending the reification of human beings resulting from the pre-eminence of the biomedical paradigm and facilitating cooperation between disciplines. Participants consider acupuncture as a complete medicine, not merely as a technique, and highlight the importance of traditional Chinese concepts to practise it.
When Hansen’s disease became treatable in Taiwan in the mid-20th century, a group of Hansen’s disease patients lost their sick role despite still having lingering symptoms that continued to evolve. While sociologists have explored in-depth situations in which the social role of the sick is ambiguous, few studies have investigated body experiences under liminality that requires sick people to find a new sick role. Living with lingering symptoms in a post–Hansen’s disease world, the Hansen’s disease patients I have studied face the conundrum of having to find an alternative sick role. Ethnographic fieldwork demonstrates how patients develop a specific set of body techniques that shape and are shaped by their membership in a patient community. Exploring the reinforcing projects of re-embodiment and sociality around Hansen’s disease, I argue that patients are able both to legitimate each other’s feelings of sickness and to use those feelings to manage their illness and, as such, to collectively acquire an alternative sick role. Adding to existing discussions of active patients, this article identifies the body mechanical as a way of practicing active patienthood organized around fixing, trials, mending and functionality.
It is perhaps no surprise that young people can be sceptical of the drug-related information they receive in school-based health education, health promotion and the media. Significant societal anxiety surrounds young people’s drug consumption, so it is tempting to approach this scepticism as a problem to be solved. In this article, we look closely at a group of young Australian men (n = 25), all of whom hold deeply sceptical views about the drug information they received in schools, social marketing campaigns and public speech generally. We do not approach their scepticism as a problem to be solved in itself, however. Instead, we analyse its origins and how it relates to the way knowledge is constructed in drug education, health promotion and media accounts of drug use. To conceptualise this scepticism, we draw on Irwin and Michael’s analysis of the changing relationship between science and society, Warner’s theorisation of publics and counterpublics, and Race’s related notion of ‘counterpublic health’. The article organises the data into three key themes: scepticism about the accuracy of the claims made about drug risks and dangers, scepticism about representations of drug users, and scepticism about the motivations behind the health messages and drug policy in general. We then draw these different aspects of scepticism together to argue that the young men can be seen to constitute a health ‘counterpublic’, and we consider the implications of this approach, arguing for what has been described as a more diplomatic engagement between science and publics.
Previous research examining online support forums has tended to focus either on evaluating their effectiveness while paying limited or no attention to the details of the interactions therein, or on features of their social organization, without regard to their effectiveness in fulfilling their stated purposes. In this article, we consider both the interactional features of a forum and participants’ treatment thereof as being effective (or otherwise), thus adopting a view of effectiveness grounded in participants’ proximate orientations and actions. Our analysis demonstrates some ways in which participants produce ratified displays of empathy in response to troubles expressed by another, as well as considering some designedly supportive actions that are treated by their recipients as unsupportive or antagonistic. Our findings indicate some structural features of such forums that facilitate the production of support, while suggesting that claims of knowledge tend to be treated as a basis of resistance to ostensibly supportive actions.
A discursive-materialist framework of agency asserts the mutual constitution of agency within cultural discursive, economic, and embodied material structures. Understanding how HIV-positive men who have sex with men in the Philippines negotiate agency vis-a-vis wider social structures, we utilized Foucault’s care of the self to locate agency in relationships with the self, others, and the broader world. Using data from narratives of 20 Filipino HIV-positive men who have sex with men, we analyzed the negotiation of agency as HIV-positive as embedded in the unique discursive terrain of Roman Catholicism and the economic materiality of a developing country. Three main processes of negotiating agency are elaborated: (1) questioning the spiritual self and the sexual body in the relationship with the self, (2) navigating interpersonal limits to care giving in the relationship with others, and (3) reclaiming human dignity in health care in the relationship with the broader world. Theoretical insights on the discursive and material constitution of healing in light of discursive and material challenges are discussed.
In Balint groups, (para)medical professionals explore difficult interactions with patients by means of case presentations and discussions. As the process of Balint group work is not well understood, this article investigates Balint group meetings by making use of Lacan’s theory of the four discourses. Five Balint group case presentations and their subsequent group discussion were studied, resulting in the observation of five crucial aspects of Balint group work. First, Balint group participants brought puzzlement to the group, which is indicative of the structural impossibility Lacan situates at the basis of all discourse (1). As for the group discussion, we emphasize ‘hysterization’ as a crucial process in Balint group work (2), the supporting role of the discourse of the analyst (3) and the centrality of discourse interactions (4). Finally, the potential transformation of the initial puzzlement is discussed (5). We conclude by putting forth the uniqueness of Balint group work as well as the potential usefulness of our analysis as a framework for Balint group leaders and professionals in charge of continuing medical education.
The concept of careers has an extensive history in the sociology of health and illness. Among other things, the notion of a career has been used to describe the changing identities of patients diagnosed with mental illness, to identify distinct stages in the progression of various illnesses, and to recognize the cooperative efforts of hospitalized patients. However, the career concept may be reanalyzed as part of an analytical metaphor that makes salient both the agency of people with illnesses and the social structures in which they are enmeshed. This metaphor, ILLNESS IS WORK, can valorize and aid understanding of the identity work and actions of patients with chronic illnesses, particularly illnesses with a low degree of social recognition and medical prestige such as myalgic encephalopathy and chronic fatigue syndrome.
This article argues that rehabilitation enacts a particular understanding of "the human" throughout therapeutic assessment and treatment. Following Michel Callon and Vololona Rabeharisoa’s "Gino’s Lesson on Humanity," we suggest that this is not simply a top-down process, but is cultivated in the application and response to biomedical frameworks of human ability, competence, and responsibility. The emergence of the human is at once a materially contingent, moral, and interpersonal process. We begin the article by outlining the basics of the actor–network theory that underpins "Gino’s Lesson on Humanity." Next, we elucidate its central thesis regarding how disabled personhood emerges through actor–network interactions. Section "Learning Gino’s lesson" draws on two autobiographical examples, examining the emergence of humanity through rehabilitation, particularly assessment measures and the responses to them. We conclude by thinking about how rehabilitation and actor–network theory might take this lesson on humanity seriously.
In this article, we explore the role of ‘place’ in shaping people’s illness experiences through a data-led inductive case-study based on experiential data from people living with myalgic encephalomyelitis (ME) in Norway. Our main aim is to understand how they experience, interpret and attach meaning to various places in which they reside, and how they construct the course of a life influenced by chronic illness. The study is based on stories containing photographs and written texts, received from 10 women and men. In their stories, they describe those places where they experience their illness in the least and most taxing ways. Through a narrative and photographic analysis of their stories, we explore how they perceive the relationship between place and illness as experienced, managed and endured. Our analysis is based on a place-sensitive sociology, in which we approach place both as physicality and a symbolic construction. The participants describe how a wide range of places are intimately linked to their illness experiences, and they interpret these links by referring to both physical and symbolic factors. They describe their lives in terms of a need for equilibrium between activity and rest. Risk is a strong underlying theme: whatever they do, they risk losing something. Most of all, the participants describe how they are looking for places to escape to and from. Places to escape to are those places where privacy and peace can be found, which primarily revolve around being at home. Places to escape from are those places that make their energy ‘slowly ebb away’.
Having a ‘balanced lifestyle’ is often promoted as one way to manage the competing demands of contemporary life. For people with cancer, those demands are often multiplied, particularly when they use self-health approaches that seek to bring together an array of biomedical and complementary and alternative medicine therapies and practices. Yet, how balance is used in this complex healthcare milieu and the affects it has on experiences of illness are less well understood. In order to follow the polyphonic narratives involved, two case studies of women with breast cancer who used cancer self-health approaches were analysed. By exploring different modes of subjectivation in the case studies, balance was found to affect experiences of health in contemporary society in multiple ways. In particular, it was one way through which participants saw themselves as being able to maintain a critical engagement not just with their healthcare, but with their self and life.
This study examines the slimming practice produced by Internet-based weight-loss services and their use. Drawing on theories of practice, the study analyses the script of use that is constructed by the services, and the meanings, materialities and competences that are enacted in their use. Based on 20 semi-structured interviews with women who were users of two Finnish online weight-loss services, the study concludes that the services transform food into quantitative depictions of calories and nutrition. They configure slimmers as calculative agents and slimming as a practice based on incessant recording and monitoring. For online slimmers, the services acted in the double role of a control device with a focus on calorie restriction, and a learning device used to develop a skill of healthy eating. In the latter role, online slimming was hoped to result in an internalisation of a lifestyle change that would make calculation and constant monitoring unnecessary and the services redundant for their users. The results suggest that for its practitioners, online slimming is temporary rather than long-standing, but it may and is expected to act as a mediary in establishing other practices related to healthy lifestyles.
Choice and patient involvement in decision-making are strong aspirations of contemporary healthcare. One of the most striking areas in which this is played out is maternity care where recent policy has focused on choice and supporting normal birth. However, birth is sometimes not straightforward and unanticipated complications can rapidly reduce choice. We draw on the accounts of women who experienced delay during labour with their first child. This occurs when progress is slow, and syntocinon is administered to strengthen and regulate contractions. Once delay has been recognized, the clinical circumstances limit choice. Drawing on Mol’s work on the logics of choice and care, we explore how, although often upsetting, women accepted that their choices and plans were no longer feasible. The majority were happy to defer to professionals who they regarded as having the necessary technical expertise, while some adopted a more traditional medical model and actively rejected involvement in decision-making altogether. Only a minority wanted to continue active involvement in decision-making, although the extent to which the possibility existed for them to do so was questionable. Women appeared to accept that their ideals of choice and involvement had to be abandoned, and that clinical circumstances legitimately changed events.
Self-monitoring, by which individuals record and appraise ongoing information about the status of their body in order to improve their health, has been a key element in the personal management of conditions such as diabetes, but it is now also increasingly used in relation to health-associated behaviours. The introduction of self-monitoring as an intervention to change behaviour is intended to provide feedback that can be used by individuals to both assess their status and provide ongoing support towards a goal that may be formally set or remains implicit. However, little attention has been paid to how individuals actually engage in the process or act upon the information they receive. This article addresses this by exploring how participants in a particular trial (‘Get Moving’) experienced the process and nature of feedback. Although the trial aimed to compare the potential efficacy of three different monitoring activities designed to encourage greater physical activity, participants did not present distinctly different accounts of each intervention and the specifics of the feedback provided. Instead, their accounts took the form of much more extended and personal narratives that included other people and features of the environment. We draw on these broader descriptions to problematise the notion of self-monitoring and conclude that self-monitoring is neither solely about ‘self’ nor is it exclusively about ‘monitoring’. We suggest that a more expansive social and material understanding of feedback can give insight into the ways information is made active and meaningful for individuals in their everyday contexts.
In the past couple of decades, there has been significant interest in the research literature and patient narratives that focus on describing the cancer journey as involving existential and spiritual transformative experiences. The purpose of this article is to contribute with a new and deepened understanding of the existing literature by offering a philosophical informed analytic conceptualization that highlights the ‘liminal’, transformative and ‘generative’ dimension of the cancer journey. For that purpose, qualitative data drawn from a qualitative study investigating existential experiences of a group of Danish patients in rehabilitation were analysed employing the American phenomenologist Anthony J. Steinbock’s interpretation of the Husserlian concepts homeworld/alienworld (Heimwelt/Fremdwelt). Data used in this article derived from qualitative interviews (11 individual interviews and 9 focus group interviews) with cancer patients participating in rehabilitation week courses at a Danish rehabilitation centre. The analysis led to the development of three themes: ‘The heavy break with the homeworld’, ‘Realizing a new homefellowship’ and ‘Transformation of the homeworld’. Findings suggest that journeying with cancer involves a ‘liminal’ experiencing of having to navigate in a borderless and unfamiliar territory between a homeworld and an alienworld before ultimately arriving at a sense of transformation in which meaning is derived from both lifeworlds. It is argued that such an understanding of the intersubjectivity between lifeworlds highlights the need for health care professionals communicating with patients throughout their cancer journey about whether and how the illness experiences have been integrated into their lifeworld and whether help is needed in order to achieve existential rehabilitation.
The relationship between the arts and health is now of interest to policy makers, patients, professionals and health researchers. This article historicises the potential for holism, a current aspiration within the medical humanities. This contemporary debate in the research community reflects philosophical positions about idealism and realism, with their traceable historical roots. This article summarises those roots and draws attention to their current relevance for health researchers. Starting with the recognition within the medical humanities that biomedical reductionism now attracts criticism, it moves to exploring the history of ideas in philosophy, the arts and science about holism and the challenge of researching health and illness within the complexity of being fully human.
Philanthropic temporary sobriety initiatives such as Dry July, FebFast and Ocsober have become increasingly popular in Australia and have begun to spread to other locations both for their fundraising potential and as a grassroots public health measure to promote more responsible attitudes to alcohol consumption. This article presents findings from a series of in-depth, post-campaign interviews with FebFast 2014 participants and staff about how these campaigns can be understood as a form of public pedagogy or non-traditional learning that purposefully cultivates and suggests health-promoting meanings for embodied experience. It explicates the mechanisms of public pedagogies that rely on embodiment and, importantly, considers the learner’s perspective on the pedagogical process. Temporary sobriety initiatives are found to operate thanks to (1) a structure that prescribes and facilitates short-term changes and enforces compliance with a social contract of philanthropy and (2) messaging that guides participants in their evaluation and assessment of their experience of temporary sobriety as physically and psychologically beneficial, as well as socially informative and impactful.
Self-management is recommended by policy and clinical guidelines as a way to contend with the growing incidence of osteoarthritis-related joint pain in an ageing population. Sociologists assert that self-management is as much about lay strategies for dealing with the biographically disruptive qualities of chronic illness as opposed to solely complying with medical regimens. The original concept of biographical disruption coined by Bury is not uncontested. Chronic joint pain has been characterised as featuring ‘co-existing meanings’ of significance and consequence. The former conferring no biographical disruption due to osteoarthritis being associated with ‘normal ageing’ and the latter causing biographical disruption due to the corporeal limitations joint pain imparts, which, in turn, can influence whether, why and how self-management is undertaken. This article reports findings from repeat interviews and a diary study completed by 22 participants with chronic knee pain. We explore the co-existing but temporally divergent ‘meanings as significance’ associated with knee pain. Participants describe the onset and current experience of the pain in terms of biographical normality (retrospective or contemporaneous meanings). Future meanings as significance are mediated by cultural beliefs about ageing and current physical consequences of the condition, and also have a distinct character of their own. Knee pain is associated with the possibility of disability and harbours a distinct risk; potential disruption to everyday social relationships, notably relating to care and dependency. In turn, future meanings of significance influence the preventative self-management strategies that people utilise. We argue for a more cogent theoretical understanding of temporal dimensions of biographical disruption, biographical work and subsequent self-management by utilising and extending the thought of Bury, and Corbin and Strauss. Doing so helps to understand patient self-management strategies and facilitates self-management support in clinical settings for osteoarthritis and potentially other chronic conditions.
We argue that successful participatory mental health organisations should be seen as ‘engines of alternative objectivity’ rather than as the subjective ‘other’ to objective science. With the term ‘alternative objectivity’, we point to collectivisations of experience that are different to biomedical science but are nonetheless forms of objectivity. Taking inspiration from feminist theory, science studies and sociology of culture, we argue that participatory mental health organisations generate their own forms of objectivity through novel modes of collectivising experience. Through two case studies, the Hearing Voices Movement and Stepping Out Theatre Company, we demonstrate how successful participatory organisations can be seen as ‘engines of alternative objectivity’ rather than as the subjective other to objective, biomedical science. The Hearing Voices Movement cultivates an ‘activist science’ that generates an alternative objective knowledge through a commitment to experimentation, controlling, testing, recording and sharing experience. Stepping Out distinguishes itself from drama therapy by cultivating an alternative objective culture through its embrace of high production values, material culture, aesthetic standards and critical review processes. A crucial aspect of participatory practice is overcoming alienation, enabling people to get outside of themselves, encounter material worlds and join forces with others.
Although the sociology of medicine has developed a rich body of research on patients’ experiences and how they handle their illnesses, few analyses have examined doctors’ concepts of disease. Building on previous research findings that doctors consider some diseases to be more worthy than others, this article focuses on how these differences in disease prestige are articulated and made logical. We presented a focus group panel of doctors a table of 38 diseases rank-ordered by prestige according to the results of a previous quantitative study of doctors. We prompted a lively discussion among the doctors by asking them whether they were familiar with this rank order. In analysing how they managed the prestige knowledge presented to them, we focused on how they handled the value conflict between this informal rank order and the formal value of equality of treatment. Using positioning theory as a theoretical premise and a methodological tool, we found that the focus group participants created positions in their conversations that allowed them to present and discuss views on disease prestige that would be considered illegitimate if they were declared directly. However, they were able to do so without being forced to take a personal stand. Thus, we demonstrate how informal disease rankings can be produced and reproduced.
Breastmilk is widely considered as the optimum nutrition source for babies and an important factor in both improving public health and reducing health inequalities. Current international/national policy supports long-term breastfeeding. UK breastfeeding initiation rates are high but rapidly decline, and the numbers breastfeeding in the second year and beyond are unknown. This study used the concept of liminality to explore the experiences of a group of women breastfeeding long-term in the United Kingdom, building on Mahon-Daly and Andrews. Over 80 breastfeeding women were included within the study, which used micro-ethnographic methods (participant observation in breastfeeding support groups, face-to-face interviews and online asynchronous interviews via email). Findings about women’s experiences are congruent with the existing literature, although it is mostly dated and from outside the United Kingdom. Liminality was found to be useful in providing insight into women’s experiences of long-term breastfeeding in relation to both time and place. Understanding women’s experience of breastfeeding beyond current usual norms can be used to inform work with breastfeeding mothers and to encourage more women to breastfeed for longer.
What constitutes healthy eating is experiencing ongoing public debate, and this debate is increasingly taking place on the Internet. In this article, using a dialectical approach to analyse rhetorical discourse, we investigated how six highly popular Finnish nutrition counselling bloggers construct dietetic credibility and understanding. Their argumentation is compared to that of two academic experts contributing to the blog of the National Institute for Health and Welfare. Theoretically, we draw on Michael Billig’s notions on how thinking and understanding are pervasively argumentative and reflect wider socio-cultural contexts, and on the dilemmatic nature of common sense. We demonstrate how the popular Finnish nutrition counselling bloggers rhetorically constructed a more particularistic and individualistic understanding of healthy eating in their argumentation in critical opposition to the universalistic and population-based understanding. In the popular Finnish nutrition counselling bloggers argumentation, practical, subjective and moral knowledge was valued, alongside abstract, scientific knowledge. In contrast, the National Institute for Health and Welfare bloggers typically utilised population-based averages and causalities in their argumentation. We argue that arguing over healthy eating in the public domain is fundamentally an epistemic struggle, in which different forms of knowledge and ways of knowing are valued, and dilemmas related to healthy eating are deliberated.
This article presents a critical analysis of New Age culture. We draw on two empirical studies conducted in Israel and show that the lofty notions about freedom from the shackles of socially structured identities and the unifying potential this holds, as well as the claim regarding the basic equality of human beings, are utopian. Blindness toward ethno-national identity reinforces identification with a self-evident hegemonic perception, thereby leading to the exclusion of peripheral groups such as indigenous populations. This exclusion is manifested in the discourse symbolically as well as in the praxis of complementary and alternative medicine, which is one of the main fields in which New Age culture is involved. Thus, the unifying ethos in the New Age culture becomes an illusionary paradise. This article contributes to the study of power relationships between New Age culture in diverse Western countries and the native and peripheral populations of these countries, and to the sociological study of complementary and alternative medicine incorporated into health organizations.
The aim of this article is to explore how tendencies to stereotype minority ethnic groups intersect with lay discourses about them in ways that can reproduce cultural prejudices and reinforce inequalities in access to services and health outcomes. Drawing upon Black feminist and cultural studies literature, we present a theoretical examination, the stereotypes of the Black woman as ‘mammy’ and ‘matriarch’. We suggest that the influence of these two images is central to understanding the normalisation of the larger Black female body within African Caribbean communities. This representation of excess weight contradicts mainstream negative discourses of large bodies that view it as a form of moral weakness. Seeking to stimulate reflection on how unacknowledged stereotypes may shape clinical encounters, we propose that for Black women, it is the perception of strength, tied into these racial images of ‘mammy’ and ‘matriarch’ which may influence when or how health services or advice are both sought by them and offered to them. This has particular significance in relation to how body weight and weight management are/are not talked about in primary care-based interactions and what support Black women are/are not offered. We argue that unintentional bias can have tangible impacts and health outcomes for Black women and possibly other minority ethnic groups.
Personal health technologies are near-body devices or applications designed for use by a single individual, principally outside healthcare facilities. They enable users to monitor physiological processes or body activity, are frequently communication-enabled and sometimes also intervene therapeutically. This article explores a range of personal health technologies, from blood pressure or blood glucose monitors purchased in pharmacies and fitness monitors such as Fitbit and Nike+ Fuelband to drug pumps and implantable medical devices. It applies a new materialist analysis, first reverse engineering a range of personal health technologies to explore their micropolitics and then forward engineering personal health technologies to meet, variously, public health, corporate, patient and resisting-citizen agendas. This article concludes with a critical discussion of personal health technologies and the possibilities of designing devices and apps that might foster subversive micropolitics and encourage collective and resisting ‘citizen health’.
Hello Sunday Morning is an online health promotion organisation that began in 2009. Hello Sunday Morning asks participants to stop consuming alcohol for a period of time, set a goal and document their progress on a personal blog. Hello Sunday Morning is a unique health intervention for three interrelated reasons: (1) it was generated outside a clinical setting, (2) it uses new media technologies to create structured forms of participation in an iterative and open-ended way and (3) participants generate a written record of their progress along with demographic, behavioural and engagement data. This article presents a text analysis of the blog posts of Hello Sunday Morning participants using the software program Leximancer. Analysis of blogs illustrates how participants’ expressions change over time. In the first month, participants tended to set goals, describe their current drinking practices in individual and cultural terms, express hopes and anxieties and report on early efforts to change. After month 1, participants continued to report on efforts to change and associated challenges and reflect on their place as individuals in a drinking culture. In addition to this, participants evaluated their efforts to change and presented their ‘findings’ and ‘theorised’ them to provide advice for others. We contextualise this text analysis with respect to Hello Sunday Morning’s development of more structured forms of online participation. We offer a critical appraisal of the value of text analytics in the development of online health interventions.
Connecting theoretical discussion with empirical qualitative work, this article examines how sickle cell became a site of public health intervention in terms of ‘racialised’ risks. Historically, sickle cell became socio-politically allied to ideas of repair, in terms of the state improving the health of a neglected ethnic minority population. Yet, we elucidate how partial improvements in care and education arose alongside preventative public health screening efforts. Using qualitative research based in the United Kingdom, we show how a focus on collective efforts of repair can lie in tension with how services and individuals understand and negotiate antenatal screening. We illustrate how screening for sickle cell disorder calls into question narrative identity, undoing paradigms in which ethnicity, disablement and genetic impairment become framed. Research participants noted that rather than ‘choices’, it is ‘risks’ and their negotiation that are a part of discourses of modernity and the new genetics. Furthermore, while biomedical paradigms are rationally and ethically (de)constructed by participants, this was never fully engaged with by professionals, contributing to overall perception of antenatal screening as disempowering and leading to disengagement.
The shift from life-prolonging and palliative care can be fraught with interpersonal complexities as patients face dilemmas around mortality and the dying process. Nurses can play a central role in managing these moments, often with a focus on promoting and enhancing communication around: the meaning of palliative care, the nature of futility and the dying process more broadly. These sites of nurse–patient communication can be highly charged and pose unique challenges to nurses including how to balance nursing perspectives versus those of other stakeholders including doctors. Here, drawing on interviews with nurses, we explore their accounts of communication about futility and the process of transitioning to palliative care. The interviews reveal nurses’ perspectives on the following: the art of conversing around futility and managing patient resistance, the influence of guilt and individual biographies in shaping communication, the importance of non-verbal and the informal in communication, the impact of conflicting organisational expectations on nurses and the process of learning to effectively communicate. We argue that these transitional moments articulate important, and at times problematic, aspects of contemporary nursing and nurse–medical relations.
This article explores how the recent and growing promotion of local foods by public health units in Ontario, Canada, rhetorically interpellates the "good" health citizen as someone who not only takes responsibility for personal health but, through the consumption and support of "local food," also accepts and fulfills her responsibilities to care for the local economy, the community’s well-being, and the natural environment. Drawing on Charland’s concept of constitutive rhetoric, we analyze a selection of public health unit documents about local food to develop a textured account of the complex, multifaceted forms of health citizenship they constitute. Our analysis reveals that, despite their appeals to environmental sustainability and community well-being, these materials primarily characterize the ideal health citizen as an informed consumer who supports the interests of the neoliberal state through individualized lifestyle behaviors, consuming goods produced and distributed through private enterprise. By exhorting individuals to "buy local," public health discourse therefore frames responsible health citizenship principally in consumerist terms that constrain the range of available options for citizens to engage in meaningful action vis-à-vis their food systems.
Quality standards play an increasingly important role in primary care through their inscription in various technologies for improving professional practice. While ‘hard’ biomedical standards have been the most common and debated, current quality development initiatives increasingly seek to include standards for the ‘softer’ aspects of care. This article explores the consequences of both kinds of quality standards for chronic care consultations. The article presents findings from an explorative qualitative field study in Danish general practice where a standardized technology for quality development has been introduced. Data from semi-structured interviews and observations among 17 general practitioners were analysed using an iterative analytical approach, which served to identify important variations in the uses and impacts of the technology. The most pronounced impact of the technology was observed among general practitioners who strictly adhered to the procedural standards on the interactional aspects of care. Thus, when allowed to function as an overall frame for consultations, those standards supported adherence to general recommendations regarding which elements to be included in chronic disease consultations. However, at the same time, adherence to those standards was observed to narrow the focus of doctor–patient dialogues and to divert general practitioners’ attention from patients’ personal concerns. Similar consequences of quality standards have previously been framed as manifestations of an inherent conflict between principles of patient-centredness and formal biomedical quality standards. However, this study suggests that standards on the ‘softer’ aspects of care may just as well interfere with a clinical approach relying on situated and attentive interactions with patients.
The UK government is promoting the health benefits of work, in order to change doctors’ and patients’ behaviour and reduce sickness absence. The rationale is that many people ‘off sick’ would have better outcomes by staying at work; but reducing the costs of health care and benefits is also an imperative. Replacement of the ‘sick note’ with the ‘fit note’ and a national educational programme are intended to reduce sickness-certification rates, but how will these initiatives impact on doctor–patient relationships and the existing tension between the doctor as patient advocate and gate-keeper to services and benefits? This tension is particularly acute for problems like chronic pain where diagnosis, prognosis and work capacity can be unclear. We interviewed 13 doctors and 30 chronic pain patients about their experiences of negotiating medical certification for work absence and their views of the new policies. Our findings highlight the limitations of naïve rationalist approaches to judgements of work absence and fitness for work for people with chronic pain. Moral, socio-cultural and practical factors are invoked by doctors and patients to contest decisions, and although both groups support the fit note’s focus on capacity, they doubt it will overcome tensions in the consultation. Doctors value tacit skills of persuasion and negotiation that can change how patients conceptualise their illness and respond to it. Policy-makers increasingly recognise the role of this tacit knowledge and we conclude that sick-listing can be improved by further developing these skills and acknowledging the structural context within which protagonists negotiate sick-listing.
Complementary and alternative medicine practitioners have often utilised ‘holism’ as a key identification mark of their practice, distancing themselves from ‘the reductionist biomedicine’. However, the past couple of decades have witnessed increased engagement of several complementary and alternative medicines in professionalisation, which includes a degree of biomedical alignment while ‘reducing’ holistic claims in order to provide practice with a ‘credible outlook’ and move closer to the mainstream, a development which challenges the role of holism in complementary and alternative medicine practices. This article explores the strategies by which two groups of complementary and alternative medicine practitioners, namely, non-medically qualified acupuncturists and homeopaths in the United Kingdom, pragmatically accommodate holistic notions as a professional resource, a process of negotiation between maintaining their holistic premise, on the one hand, and the drive to professionalise and enhance their societal status, on the other. Based on in-depth interviews with non-medically qualified acupuncture and homeopathy practitioners and school principals, textual analysis of practitioners’ web sites and observation of practice, the findings demonstrate the dynamic approach to ‘holism’ in complementary and alternative medicine practice. This discourse, through which practitioners use a range of strategies in order to ‘narrow’ or ‘expand’ their holistic expression, can be described as ‘pragmatic holism’, by which they try to make gains from the formalisation/standardisation processes, without losing the therapies’ holistic outlook and appeal.
In this article we analyse, via a critical review of the literature, the development of a relatively new medical specialism in the United Kingdom, that of emergency medicine. Despite the high media profile of emergency care, it is a low-status specialism within UK medicine. The creation of a specialist College in 2008 means that, symbolically, recognition as a full specialism has now been achieved. In this article, we will show, using a sociology of professions approach, how emergency medicine defined itself as a specialism, and sought to carve out a distinctive jurisdiction. While, in the context of the UK National Health Service, the state was clearly an important factor in the development of this profession, we wish to develop the analysis further than is usual in the sociology of professions. We will analyse the wider cultural context for the development of this specialism, which has benefited from its high profile in the media, through both fictional and documentary sources.
Obesity is generally considered to be a growing global health problem that results from changes in the way we live in late modern societies. In this article, we argue that investigating the complexities of contemporary timescapes (i.e. the entanglement of physical, culturally framed and personally experienced times) is of key importance for understanding how ‘the obesity phenomenon’ is conceptualised, performed and acted upon. Analysing both focus groups and print-media articles, we identified three major groups of temporal narratives that shape our perception of obesity: trajectories, temporalities and timing. Each group of narratives follows a different logic and performs a specific kind of ordering work: ontological work that defines what obesity ‘really is’, diagnostic work that assesses the state of contemporary society and moral work that assigns responsibility to act. We show how the narratives are assembled into distinct timescapes that distribute agency in specific ways. Combining data from both focus groups and media articles allows us to analyse how these two discursive arenas are intertwined, as it makes visible how stories travel and converge, but also diverge in quite important ways. This highlights the importance of a multi-arena approach to fully understand the tensions between different framings of health-related issues. The article argues that the difficulties of controlling body weight are closely entangled with a perceived lack of control over time on both collective and individual levels. In conclusion, we suggest time-sensitive approaches for the analysis of health phenomena and the development of corresponding policy measures.
Chronic kidney disease stage 5 is a global health challenge in the context of population ageing across the world. The range of treatment options available to patients at all ages has increased and includes transplantation and dialysis. However, these options are often seen as inappropriate for older frailer patients who are now offered the option of conservative kidney management, which is presented as a non-invasive alternative to dialysis, involving symptom management and addressing psychosocial needs. In this study, we conducted qualitative interviews with 26 close persons caring for someone with chronic kidney disease stage 5 in the United Kingdom to investigate how conservative kidney management interacted with implicit ideas of ageing, in both the experience of conservative kidney management and the understanding of the prognosis and future care of the kidney disease. Our findings highlighted participant confusion about the nature of conservative kidney management, which stems from an initial lack of clarity about how conservative kidney management differed from conventional treatments for chronic kidney disease stage 5. In particular, some respondents were not aware of the implicit palliative nature of the intervention or indeed the inevitable end-of-life issues. Although these findings can be situated within the context of communication failure, we would further argue that they also bring to the surface tensions in the discourses surrounding ageing and old age, drawing on the use of a ‘natural’ and a ‘normal’ paradigm of ageing. In the context of chronic kidney disease stage 5, more patients are being dialysed at older ages, but conservative kidney management is being advanced as a better option than dialysis in terms of quality of life and experience. However, in doing so, conservative kidney management implicitly draws on a notion of older age that echoes natural ageing rather than advocate a more interventionist approach. The role of discourses of ageing in the provision of treatments for conservative kidney management has not previously been acknowledged, and this article addresses this gap.
Area-based initiatives have formed an important part of public policy towards more socio-economically deprived areas in many countries. Co-ordinating service provision within and across sectors has been a common feature of these initiatives. Despite sustained policy interest in area-based initiatives, little empirical work has explored relations between area-based initiative providers, and partnership development within this context remains under-theorised. This article addresses both of these gaps by exploring partnerships as a social and developmental process, drawing on concepts from figurational sociology to explain how provider relations develop within an area-based initiative. Qualitative methods were used to explore, prospectively, the development of an area-based initiative targeted at a town in the north west of England. A central finding was that although effective delivery of area-based initiatives is premised on a high level of co-ordination between service providers, the pattern of interdependencies between providers limits the frequency and effectiveness of co-operation. In particular, the interdependency of area-based initiative providers with others in their organisation (what is termed here as ‘organisational pull’) constrained the ways in which they worked with providers outside of their own organisations. ‘Local’ status, which could be earned over time, enabled some providers to exert greater control over the way in which provider relations developed during the course of the initiative. These findings demonstrate how historically constituted social networks, within which all providers are embedded, shape partnership development. The theoretical insight developed here suggests a need for more realistic expectations among policymakers about how and to what extent provider partnerships can be managed.
This article uses a Bourdieusian framework to understand the importance of clothing norms for symbolizing and reproducing social, as well as professional, hierarchy in hospitals. Using data from participant observation, it examines how a complex yet informal dress code has emerged at a community hospital in the Northeastern United States, in a setting where very few formal guidelines exist on how to dress. By conceptualizing professionals as holders of various types of capital (economic, cultural, and symbolic), this article expands previous research which considered clothing only as a marker of professional identity. The findings demonstrate (1) how clothing norms are used in subtle, but purposeful, ways to reflect varying degrees of cultural and economic capital and (2) how these complex norms also reflect professional boundaries in medical authority (symbolic capital), which is important during critical moments where clothing can quickly signal who can take control. The discussion borrows Bourdieu’s concepts of habitus and field to explain why subordinates subscribe to these clothing norms, in the absence of a formal organizational dress code.
There is a growing emphasis within the diabetes literature on the importance of empowerment as a way of encouraging people to take control of and responsibility for the successful management of their disease. Patients are actively encouraged to become active participants in their care, and there is an expectation that health-care professionals will facilitate this process. This article uses Bourdieu’s concept of field, as a bounded social space in which actors conduct their lives day-to-day, to explore the context within which issues of empowerment are addressed and negotiated. The practice of empowerment within the biologically defined and biomedically ‘policed’ field of diabetes is explored using empirical data from a study of diabetes health-care professionals’ understanding and practices around empowerment. It is concluded that rather than promoting active self-management and empowerment, the nature of the field of diabetes, and in particular its privileging of the biomedical, can mitigate against people with diabetes negotiating the field effectively and taking control of the disease and its management.
Conferences are novel sites for understanding medical work. Through describing styles of presentation that take place at conferences attended by patients and parents, this article highlights how clinicians on stage present ordinary and extraordinary aspects of medicine. Attention is drawn to the reaction of the parents in the audience. The power of the presenter to direct proceedings highlights the potential vulnerability of the audience. The relationship between clinician on stage and parents in the audience reflects the clinical relationship between doctor and patient. But through identifying insiders and outsiders, the conference setting also enables new relationships and collective identities to be formed. Drawing on an ethnographic study of rare disease conferences, this article extends understanding of medical work by identifying how conferences offer new ways of witnessing the clinical gaze, the doctor–patient relationship and the formation and enactment of a conference community.
This paper critically appraises the discourse around international medical migration at the turn of the 21st century. A critical narrative review of a range of English-language sources, including grey literature, books and research reports, traces the development and spread of specific causative models. The attribution of causative relations between the movement of skilled medical workers, the provision of health care and population health outcomes illustrates how the global reach of biomedicine has to be understood in the context of local conditions. The need to understand migration as an aspect of uneven global development, rather than a delimited issue of manpower services management, is illustrated with reference to debates about ‘brain drain’ of Africa’s health-care professionals, task-shifting and the crisis in health-care human resources. The widespread presumed cause of shortages of skilled health-care staff in sub-Saharan Africa was overdetermined by a compelling narrative of rich countries stealing poor countries’ trained health-care professionals. This narrative promotes medical professional interests and ignores historical patterns of underinvestment in health-care systems and structures. Sociological theories of medicalization suggest that the international marketization of medical recruitment is a key site where the uneven global development of capital is at work. A radical reconfiguration of medical staffing along the lines of ‘task-shifting’ in rich and poor countries’ health-care systems alike offers one means of thinking about global equity in access to quality care.
Previous research has pointed to the role television can play in informing health practices and beliefs. Within the academic setting in particular, some educators have raised concerns about the influence of medical dramas on students. Less research, however, draws on the perspectives of students, and this study therefore explores medical students’ perceptions of medical practice and professionalism in popular medical television programmes. Qualitative data from surveys of Australian undergraduate medical students showed that students perceived professionalism in dichotomous ways, with three main themes: cure–care, where a doctor’s skill is either technical or interpersonal; work–leisure, where a doctor is either dedicated to work or personal life; and clinical–administration, where work is either direct patient care or administration. There continue to be imagined divisions between curing and caring for students, who express concerns about balancing work and leisure, and expectations that doctors should have little administrative work. Given students were able to identify these important contemporary issues around professionalism on television, there is pedagogical value in using popular images of the medical world in medical education.
During the 2009 H1N1 pandemic, it was identified that women in the third trimester of pregnancy were particularly at risk of serious respiratory distress. At-risk women were advised to seek vaccination, avoid contact with anyone unwell, maintain hygiene routines and stop smoking. We examine this situation of emergent and intense risk produced at the intersection of individual biography and the historical event of a public health emergency. We examine how pregnant women took account of risk, how they negotiated incomplete and at times contradictory advice and shaped courses of action that assisted them to manage the emerging terrain of pandemic threat. Public health risk management advice was endorsed, although choosing vaccination was fraught. Social distancing, too, was seen as a valuable risk moderation strategy. However, time, and specifically the intersection of individual pregnancy timelines with the pandemic’s timeline, was also seen as an important risk management resource. The implications of this mix of sanctioned and temporal risk management practices are discussed.
Existing accounts of dry mouth concentrate on the medical dimensions and almost completely neglect to consider its social dimensions. Simultaneously, debates on disability have highlighted an apparent split between the individual (medical) and social models of disability. The concept of ‘impairment effects’ aims to address this dichotomised approach. Impairment effects consider the everyday impact of people’s impairments on their lives in conjunction with the disabling impacts encountered through their relations with society, and society’s relations with them. This study indicates that identity and self became entangled with impairment effects and a form of disablism. The authors argue that impairment effects are, at times, a useful concept, but in some instances may actually overcomplicate things. By analysing the public and private dimensions of a chronic condition such as dry mouth, we have been enabled to explore the boundary between public and private lives. As a consequence, using public and private accounts may assist us to better locate the point where impairment ends and disability begins.
Cardiovascular diseases are leading causes of premature mortality and disability. Although health institutions have developed and promoted cardiac rehabilitation programs, they have not attained their desired outcomes, especially among the most vulnerable groups of the population. This study qualitatively examines socially and materially deprived men’s (n = 20) noncompliance with cardiovascular health guidelines following a medical intervention to the heart. By drawing on Pierre Bourdieu’s sociocultural theory of practice, results indicate that precarious living conditions obstruct long-term physical recovery and illness prevention by underemphasizing the value of "health capital" and reducing the capacity to sustain lifestyle change. This study calls into question health policies that have little to no consideration of embodied practical knowledge and lived experiences.
This article argues in favor of a sociological perspective on health and illness, drawing on recognized positions from the philosophy of health and illness about how to demarcate disorder from non-disorder. The argument specifies that a normative context in which bodies or behaviors are disvalued is a necessary component for identifying what constitutes a disorder, as this normative context allows material differences to be understood as dysfunctional and pathological. Descriptions of material states in themselves are insufficient to distinguish what is legitimately a disorder; some evaluative stance toward those states is also required. This article applies the argument to disorders of inattention and hyperactivity, currently best known as Attention-Deficit Hyperactivity Disorder. These disorders have been controversial since their formalization in the 1970s, the same time that they began receiving sociological attention. Sociological analyses have consistently expressed ambivalence toward recognizing claims about the biological status of such disorders. This ambivalence has at times committed to a problematic relationship between sociological explanation and medical explanation, implicitly allocating sociological explanation to an auxiliary position. This article argues that this is not necessary, as sociological perspectives address disorders on a fundamental, rather than secondary, register. Disorders are only intelligible due to the normative and social context in which they are found, and so medical sociology can recognize the validity of biological claims about disorders, such as Attention-Deficit Hyperactivity Disorder, while still asserting the essential social nature of disorder.
The English National Health Service Constitution states that patients have the right to expect all decisions about access to medicines and treatments to be made ‘rationally’. Rationality in health care can be framed as instrumental, institutional or practical. In this article, we present a case example from an ethnographic study of the work of ‘Individual Funding Request’ panels to explore how rationality is enacted and accounted for in deliberations about the rationing of health care in the National Health Service. Our rhetorical analysis highlights how an embodied, practical rationality emerges as a significant aspect of rationality in practice, but at the same time has a problematic status in formal accounts of decision-making. We suggest that being both ‘human’ and ‘rational’ is a ‘delicate balance’ and creates a dilemma for Individual Funding Request panels. Aristotle’s notion of phronesis provides a useful lens for theorising our observation of panel deliberations, and we argue for greater attention to the value of narrative ethics in helping us understand the challenges faced by resource allocators.
As the capacities of Reproductive Genetic Technologies expand, would-be parents face an increasing number of reproductive decisions regarding testing and screening for different conditions. Several studies have acknowledged the role that ‘experiential knowledge of disability’ plays in arriving at decisions around the use of these technologies; however, there is a lack of clarity within this literature as to what constitutes ‘experiential knowledge of disability’ and an over-reliance on medical diagnoses as a shorthand to describe different types of experience. Drawing on both social model of disability theory and the literature on chronic illness, this article presents an analysis of data from an in-depth qualitative interview study with 64 people with an inheritable condition in their family, Spinal Muscular Atrophy, and reports their views around reproduction and Reproductive Genetic Technologies. An experiential typology is presented which demonstrates the way in which experiences of ‘disability’, ‘embodied experiences of impairment’ or ‘embodied experiences of illness, death and bereavement’ are strategically privileged in accounts of reproductive decisions, in order to validate reproductive decisions taken, and, specifically, justify use (or non-use) of Reproductive Genetic Technologies. By highlighting the experiential categories within which participants embedded their reproductive decisions, this article draws attention to the porous and collapsible nature of diagnostic categories in the context of reproductive decision-making and genetic risk, and suggests new ways of researching ‘experiential knowledge of disability’ within these contexts which are able to account for the various contours of the embodied lived reality of life with ‘disability’.
An increasing number of patients become eligible for organ transplants. In the Netherlands, at the level of policy discourse, growing waiting lists are often referred to as a persistent "shortage" of organs, producing a "public health crisis." In this way, organ donation is presented as an ethical, social, and medical necessity. Likewise, policy discourse offers a range of seemingly unambiguous solutions: improving logistical infrastructure at the level of hospitals, developing organizational and legal protocols, as well as public information campaigns. Instead of taking these problem and solution definitions as given, we critically examine the relationship between policy discourse and clinical practice. Based on a historical review, first, we trace the key moments of transformation where organ donation became naturalized in Dutch policy discourse, particularly in its altruistic connotation. Second, based on in-depth interviews with medical professionals, we show how those involved in organ donation continue to struggle with the controversial nature of their clinical practice. More specifically, we highlight their use of different forms of knowledge that underlie clinicians’ "transition work": from losing a patient to "gaining" a donor.
Exploring patients’ narratives can lead to new understandings about perceived illness states. Intensive Care Unit delirium is when people experience transitory hallucinations, delusions or paranoia in the Intensive Care Unit and little is known about how this experience affects individuals who have had a heart or lung transplant. A total of 11 participants were recruited from two heart and lung transplant services and were invited to tell their story of transplant and Intensive Care Unit delirium. A narrative analysis was conducted and the findings were presented as a shared story. This shared story begins with death becoming prominent before the transplant: ‘you live all the time with Mr Death on your shoulder’. Following the operation, death permeates all aspects of dream worlds, as dreams in intensive care ‘tunes into the subconscious of your fears’. The next part of the shared story offers hope of restitution; however, this does not last as reality creeps in: ‘I thought it was going to be like a miracle cure’. Finally, the restitution narrative is found to be insufficient and individuals differ in the extent to which they can achieve resolution. The societal discourse of a transplant being a ‘gift’, which gives life, leads to internalised responsibility for the ‘success’ or ‘failure’ of the transplant. Participants describe how their experiences impact their sense of self: ‘a post-transplant person’. The clinical implications of these findings are discussed.
Our objective was to explore how prospective altruistic kidney donors construct their decision to donate. Using a qualitative design and biographical-narrative semi-structured interviews, we aimed to produce text for analysis on two levels: the social implications for subjectivity and practice and a tentative psychodynamic explanation of the participants’ psychological investment in the discourses they used. A total of six prospective altruistic kidney donors were interviewed. A psychosocial approach to the analysis was taken. In-depth discourse analysis integrated Foucauldian with psycho-discursive approaches and psychodynamic theory was applied to sections of text in which participants seemed to have particular emotional investment. Analysis generated three major discursive themes: other-oriented, rational and self-oriented discourses. The desire to donate was experienced as compelling by participants. Participants used discourses to position themselves as concerned with the needs of the recipient, to resist questioning and criticism, and to manage difficult feelings around mortality. Participants tended to reject personal motivations for altruistic donation, positioning relatives’ disapproval as selfish and illogical. These results suggest that the term ‘altruistic’ for living non-directed organ donation constrains available discourses, severely limiting what can be said, felt, thought and done by donors, clinicians and the public. A more useful approach would acknowledge potential psychological motives and gains for the donor.
Across the United Kingdom, large numbers of crisis resolution and home treatment services have been established with the aim of providing intensive, short-term care to people who would otherwise be admitted to mental health hospital. Despite their widespread appearance, little is known about how crisis resolution and home treatment services are organised or how crisis work is done. This article arises from a larger ethnographic study (in which 34 interviews were conducted with practitioners, managers and service users) designed to generate data in these and related areas. Underpinned by systems thinking and sociological theories of the division of labour, the article examines the workplace contributions of mental health professionals and support staff. In a fast-moving environment, the work which was done, how and by whom, reflected wider professional jurisdictions and a recognisable patterning by organisational forces. System characteristics including variable shift-by-shift team composition and requirements to undertake assessments of new referrals while simultaneously providing home treatment shaped the work of some, but not all, professionals. Implications of these findings for larger systems of work are considered.
Complementary and alternative medicine is increasingly popular in Australia and particularly among women. While existing research provides some understanding of women’s engagement with complementary and alternative medicine and biomedicine, there has been comparatively little examination of the day-to-day character of their experiences. In this study, we utilise solicited diaries with women aged 60–65 years drawn from the 1946–1951 cohort of the Australian Longitudinal Study on Women’s Health to capture the temporal dimension of their therapeutic engagement. Focusing on 30 active complementary and alternative medicine users, we explore women’s experiences of managing their health, illness and well-being over a 1-month period. The themes that emerge from their diaries illustrate the day-to-day enactment of lay expertise through informal knowledge networks, practices of self-trialling and experimentation and the moralities underpinning self-care. The diaries provide unprecedented temporal insight into the (often problematic) enactment of lay expertise at the nexus of complementary and alternative medicine and biomedicine. They also point to the value of longitudinal techniques of data collection for augmenting more traditional sociological ways of exploring therapeutic pluralism.
Systemic lupus erythematosus (lupus) is a complex condition characterised by wide ranging symptoms that are sometimes transient in nature. This makes recognising and diagnosing lupus particularly challenging for both patients and practitioners. The diagnostic process in this condition is a complex interplay between the boundaries of knowledge and power, control, integrity and legitimacy, which are (re)constructed and (re)negotiated between contemporary medicine, the patient and practitioner. Utilising data generated through a qualitative research design, this article illustrates some of the challenges lupus presents in the clinical encounter. We argue that the diagnosis of lupus is not a clinical event or a ‘diagnostic moment’. Rather, it constitutes a journey in and of itself, one which, for many of the respondents in this study, has no diagnostically satisfying conclusion. We conclude that uncertain diagnoses, such as lupus, illustrate the extent of both embodied and clinical doubt in, what might be termed, contemporary conditions and, concomitantly, throw into sharp relief the nature of the diagnostic process. This process, in the context of lupus, and other uncertain conditions, generates, we would argue, a sense of diagnostic vertigo.
This article, based on qualitative research with working-class men, explores men’s perceptions and experiences regarding gender differences in health. It demonstrates how men put forward a range of behavioural/cultural, materialist/structural and psychosocial factors, which were believed to differently impact men’s health compared to women. A common theme underpinning their explanations was the ways in which men and women were located within two distinct gender categories. These characterisations were used to explain why health-damaging beliefs and behaviours were more prevalent among men and also why men were better suited for certain kinds of jobs, albeit with potential costs to their health. Men also believed that women were protected from the damaging physical and emotional impact of manual employment because of their primary role within the home and because they were less emotionally robust, which required men to shield women from the stresses they experienced. However, men’s emotional withdrawal can also be viewed as another example of how men use whatever resources are available to achieve and maintain dominance over women. Finally, the article demonstrates how a gender- and class-based approach can capture the impact of men’s health-related practices alongside the broader cultural and structural influences on men’s health.
This article considers the fate of Asperger’s disorder in the light of proposals for the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) to collapse Asperger’s disorder along with other pervasive developmental disorders into a general spectrum of autism. It is argued that a powerful lay and scientific culture has evolved around the concept of Asperger’s disorder, which has found a particularly compelling voice over the last decade in the online Asperger community, with websites such as Wrong Planet recruiting tens of thousands of members. In order to assess the impact of these proposed changes on the online Asperger community, 19 threads on the topic of Diagnostic and Statistical Manual of Mental Disorders (5th ed.) are analysed according to the arguments that community members put forward in favour of, or in opposition to, the proposals. Many members embrace the notion of the spectrum and have already coined a new identity – ‘spectrumite’ – to adapt to the diagnostic shift. Others, however, are suspicious of the motives behind the absorption of Asperger’s disorder, and potential threats to the provision of services as well as the strong ‘aspie’ identity that reflects the large literature and the online public sphere around Asperger’s disorder. To what extent this culture poses a challenge to the authority of the Diagnostic and Statistical Manual of Mental Disorders is uncertain at present.
Clinicians often report that currently available methods to assess older patients, including standard clinical consultations, do not elicit the information necessary to make an appropriate cancer treatment recommendation for older cancer patients. An increasingly popular way of assessing the potential of older patients to cope with chemotherapy is a Comprehensive Geriatric Assessment. What constitutes Comprehensive Geriatric Assessment, however, is open to interpretation and varies from one setting to another. Furthermore, Comprehensive Geriatric Assessment’s usefulness as a predictor of fitness for chemotherapy and as a determinant of actual treatment is not well understood. In this article, we analyse how Comprehensive Geriatric Assessment was developed for use in a large cancer service in an Australian capital city. Drawing upon Actor–Network Theory, our findings reveal how, during its development, Comprehensive Geriatric Assessment was made both a tool and a science. Furthermore, we briefly explore the tensions that we experienced as scholars who analyse medico-scientific practices and as practitioner–designers charged with improving the very tools we critique. Our study contributes towards geriatric oncology by scrutinising the medicalisation of ageing, unravelling the practices of standardisation and illuminating the multiplicity of ‘fitness for chemotherapy’.
In this article, I am concerned with doctors’ negotiations of the temporal dimension of the diagnostic criteria of depressive disorders during the first psychiatric interview. The data come from 16 initial psychiatric interviews recorded by doctors in three psychiatric hospitals in Poland. Taking a constructionist view of discourse and psychiatric practices, I shall argue that the discursive practice related to temporal information about patients’ illnesses serves in gaining information, which is useful in the medical model of psychiatric diagnosis. The doctors positioned the patients’ experiences on the timeline when the illness history was taken and temporal information authenticated the information. Conversely, the patients’ current conditions were constructed in a limitless present, which allowed the psychiatrists to remove the relativity.
Food allergy is an illness that requires constant risk management in everyday life. To date, there is no cure or preventive treatment, and the only way to manage the condition is therefore careful avoidance of the offending foodstuff and treatment of reactions when they occur. This article draws on a socio-cultural approach to explore parents’ understandings and management of child food allergy in the context of everyday life, as ‘situated’ risk. A focus group study was carried out with 31 parents of children diagnosed with food allergy at two children’s hospitals. The analysis of the focus group material reveals how the management of allergy risk seems to permeate most aspects of everyday life as well as how the parents draw on a dominant norm of risk avoidance as well as a counter-discourse of calculated risk taking. The patterns of risk management found in this study are discussed in terms of how risk avoidance and risk taking are intertwined and balanced in the context of moral parenthood.
Drawing on evidence from the Framingham Heart Study, Christakis and Fowler in their 2007 article published in the New England Journal of Medicine make the claim that obesity spreads in social networks. Whether they are correct in this assertion is neither the concern nor focus of this article. Rather, what is of interest is the subsequent mobilisation of ‘contagion’ to describe this spread and to account for the emergence of an ‘obesity epidemic’ in contemporary society. Contrary to the argument that there is less stigma attached to obesity, the reporting of the Christakis and Fowler article suggests that being ‘fat’ remains a signifier of moral and physical decay; if we add to this the suggestion that obesity is spread within social networks, it is possible that the stigma associated with body size will begin to mirror that which is attached to other infectious bodies. In order to consider the potential implications of this, the article develops in three directions: it explores the application of contagion as a metaphor for understanding the spread of obesity; it sets this understanding within the context of scholarship on contagion and it draws on critical obesity studies literature to call for a more cautionary approach to be taken when deploying a term that when combined with pre-emptive public health discourse would add significantly to the pathologising of the corpulent, fat or obese body.
The clinical use of blood has a long history, but its apparent stability belies the complexity of contemporary practices in this field. In this article, we explore how the production, supply and deployment of blood products are socially mediated, drawing on theoretical perspectives from recent work on ‘tissue economies’. We highlight the ways in which safety threats in the form of infections that might be transmitted through blood and plasma impact on this tissue economy and how these have led to a revaluation of donor bodies and restructuring of blood economies. Specifically, we consider these themes in relation to the management of recent threats to blood safety in the United Kingdom. We show that the tension between securing the supply of blood and its products and ensuring its safety may give rise to ethical concerns and reshape relations between donor and recipient bodies.
This article provides the first systematic examination of the ways ‘talk about sex’ is occasioned and managed by doctors and patients in real-life interactions in a National Health Service Gender Identity Clinic. Drawing on a corpus of 194 recordings of psychiatric assessment sessions, the article examines how parties initiate and develop talk about sex, and which strategies appear to work best for doctor–patient alignment. The analyses revealed that the most aligning methods were for clinicians to make transitions from asking questions about relationships in general to talk about sex, or to build opportunistically on patients’ relationship talk. However, talk about sex that lacked specificity or which made inaccurate presumptions about patients’ sex lives, generated misalignment between clinician and patient. I suggest that such misalignment is not intrinsically bad. Rather, it provides evidence for the virtues of a more nuanced understanding of patient-centred communication. The article concludes with a discussion of the importance of grounding communication skills training and clinical practice in recordings of actual consultations.
Children and youth with progressive conditions are living longer, and there is increased interest in designing programs that will assist them with "transitioning" to adulthood. Almost none of the transitions research to date, however, has attended to the experiences of disabled boys in "becoming men," nor has there been critical conceptual work problematizing notions of "normal" adulthood or theorizing the complex, diverse, and gendered experiences of transitioning. In this Canadian study, we investigated the intersectionality of gender, disability, and emerging adulthood with 15 young men with Duchenne muscular dystrophy. Participants created audio diaries and photographs that were explored in in-depth interviews. Using a Bourdieusian lens and Arthur Frank’s notion of the narrative habitus, we examined how participants re/negotiated identities in everyday practices. Our analysis suggested that disability, masculinities, and generational (life stage) identities intersected through "narratives of nondifference," wherein participants worked to establish identities as typical "guys." Within limited fields of school and work, participants distanced themselves from the label of "disabled" and discussed their successes and challenges in terms of normative developmental trajectories. We suggest that the pursuit of "normal" is reproduced and reinforced in health and social programs and closes off other narratives and possibilities.
While men’s gendered experiences of depression have been described, the perspectives of women partners who are affected by men’s depression have received little attention. Women partners were recruited to explore how men’s depression impacts them and its influence on gender regimes. Individual interviews with 29 women spouses were coded and analysed. Although idealized femininity positions women as endlessly patient and caring, our findings reveal significant challenges in attempting to fulfil these gender ideals in the context of living with a male partner who is experiencing depression. The strain and drain of living with a depressed man was a key element of women’s experiences. Four sub-themes were identified: (1) resisting the emotional caregiver role, (2) shouldering family responsibilities, (3) connecting men to professional care and (4) preserving the feminine self. The findings suggest that men’s depression has great potential to dislocate heterosexual gender regimes, and attention to gender relations should be included to ensure successful care management of men who experience depression.
The past decades have seen a drastic increase in the medicalization of childbirth, evidenced by increasing Caesarean section rates in many Western countries. In a rare moment of congruence, alternative health-care providers, feminist advocates for women’s health and, most recently, mainstream medical service providers have all expressed serious concerns about the rise in Caesarean section rates and women’s roles in medicalization. These concerns stem from divergent philosophical positions as well as differing assumptions about the causes for increasing medicalization. Drawing on this debate, and using a feminist and governmentality framing of the problem, we interviewed 22 women who have recently had children about their birthing choices, their expectations and their birth experiences. The women’s narratives revealed a disjuncture between their expectations of choosing, planning and achieving as natural a birth as possible, and their lived experiences of births that did not typically go to plan. They also reveal the disciplining qualities of both natural and medical discourses about birth and choice. Furthermore, their narratives counter assumptions that women, as ideal patient consumers, are driving medicalization.
Attention deficit/hyperactivity disorder is currently the most debated childhood psychiatric diagnosis. Given the circulation of competing perspectives about the ‘real’ causes of children’s behaviour and the ‘best’ way to treat them, we aim to analyse the interactions of the central social actors’ discourses about attention deficit/hyperactivity disorder children within the Italian context. Adopting a multi-method approach, we focus on the polyphonic chorus of voices surrounding the child, studying the discourses of mental health professionals, teachers and parents. These actors are representative of three contexts that are deeply engaged with attention deficit/hyperactivity disorder: medical institutions, schools and families. Our theoretical and methodological approach integrates positioning theory, the Bakhtinian notion of dialogical thinking and discourse analysis to study stakeholders’ reflexive and interactive positioning in terms of the attribution of rights, duties, responsibilities and power issues. The results show that mutual blame is a constitutive element of relational dynamics among the key adults surrounding attention deficit/hyperactivity disorder children. We argue that these conflicting relationships are not merely related to the debate regarding the validity of the attention deficit/hyperactivity disorder diagnosis. Rather, the mutual blame centres on questions of compliance, recognition of authority and morality. Through the blame game, adults negotiate their own and others’ subjectivity in ways that simultaneously (re)produce power relationships and resistance efforts.
This qualitative study explores (1) how members of the Dutch Association for People with Bipolar Disorder explain the affliction of bipolar disorder; (2) the relationship between genetic, environmental and personal factors in these explanations and (3) the relationship between illness explanations, self-management and identity. A total of 40 participants took part in seven different focus group discussions. The results demonstrate that there are two different explanatory idioms, each one centred around an opposing concept, that is, susceptibility and disease. Individuals who construct explanations around the concept of ‘disease’ attach more importance to ‘genes and chemicals’ than to environmental components in the onset of the disorder, whereas individuals adhering to the central concept of ‘susceptibility’ tend to do this much less. Compared with individuals using the ‘susceptibility’ idiom, those who use a ‘disease’ idiom tend to observe fewer possibilities for self-management and are less inclined to construct normalcy through a quest for personal growth. Stories of suffering seem more integral to the ‘disease’ idiom than to the ‘susceptibility’ idiom. The ‘disease’ idiom seems less integrated in a contemporary surveillance psychiatric discourse than the ‘susceptibility’ idiom; however, both vocabularies can offer normative constraints.
In the last decade, the field of patient safety has grappled with the complexity of health-care systems by attending to the activity of frontline clinicians. This article extends the field by highlighting the activity of patients and their carers in determining the safety of these systems. We draw on data from three studies exploring patients’ accounts of their health-care experiences in Australia and internationally, to show how patients and carers are currently contributing to the safety of their own care. Furthermore, we emphasise the importance of patient–clinician collaboration in ensuring the success of these activities. We argue that it is no longer sufficient to discuss if patients should be involved with ensuring their own safety. Given that patients are already involved, we propose a new conceptualisation of safety and systems that acknowledges their involvement and supports patient–provider collaboration to achieve safer care.
In recent times, empowerment has become the focus of much work with young people amidst increasing concerns about their health. Empowerment is often offered as a ‘solution’ to such concerns, with the uncritical assumption being made that empowerment unproblematically results in positive health outcomes. While much of the health promotion literature advocates ‘empowerment’, it often does so without offering a clear conceptualisation of the word itself or indeed addressing the thorny theoretical tensions surrounding the concept’s root word of power. In light of this omission, this article offers a more theoretically informed conceptualisation of empowerment and considers the relationship to young people’s health. This article outlines a more dynamic and generative conceptualisation of empowerment than hitherto articulated in the literature, informed by Lukes’ multidimensional perspective of power. Drawing on findings from an ethnographic study on empowerment and young people’s health, this article develops six conceptually distinct forms of empowerment (impositional, dispositional, concessional, oppositional, normative and transformative). Data were collected from 55 young men and women aged 15–16 years through group discussions, individual interviews and observational work in a school and surrounding community settings in England. Crucially, these six new forms of empowerment capture and synthesise individual, structural and ideological elements of power that differentially, and sometimes inconsistently, shape the possibilities for young people’s empowerment. Of significance is the way in which these different forms of empowerment intersect to (re)produce relations of power and may offer different possibilities for health promotion.
Empirical studies of community participation in health services commonly tie effectiveness to the perceived legitimacy of community representatives among health staff. This article examines the underlying assumption that legitimacy is the major pathway to influence for community representatives. It takes a different vantage point from previous research in its examination of data (primarily through 34 in-depth interviews, observation and recording of 26 meetings and other interactions documented in field notes) from a 3-year study of community representatives’ action in a large health region in Australia. The analysis primarily deploys Michel de Certeau’s ideas of Strategy and Tactic to understand the action and effects of the generally ‘weaker players’ in the spaces and places dominated by powerful institutions. Through this lens, we can see the points where community representatives are active participants following their own agenda, tactically capitalising on cracks in the armour of the health service to seize opportunities that present themselves in time to effect change. Being able to see community representatives as active producers of change, not simply passengers following the path of the health service, challenges how we view the success of community participation in health.
The paradox of embedded agency addresses the question of how embedded agents are able to conceive of new ideas and practices and then implement them in institutionalized organizations if social structures exert so powerful an influence on behavior, and agents operate within a framework of institutional constraints. This article proposes that dual embedded agency may provide an explanation of the paradox. The article draws from an ethnographic study that examined the ways in which dual-trained physicians, namely medical doctors trained also in some modality of complementary and alternative medicine, integrate complementary and alternative medicine into the biomedical fortress of mainstream health-care organizations. Participant observations were conducted during the years 2006–2011. The observed physicians were found to be embedded in two diverse medical cultures and to have a hybrid professional identity that comprised two sets of health-care values. Seeking to introduce new ideas and practices associated with complementary and alternative medicine to medical institutions, they maneuvered among the constraints of institutional structures while using these very structures, in an isomorphic mode of action, as a platform for launching complementary and alternative medicine practices and values. They drew on the complementary and alternative medicine philosophical principle of interconnectedness and interdependency of seemingly polar opposites or contrary forces and acted to achieve change by means of nonadversarial strategies. By addressing the structure–agency dichotomy, this study contributes to the literature on change in institutionalized health-care organizations. It likewise contributes both theoretically and empirically to the study of integrative medicine and to the further development of this relatively new area of inquiry within the sociology of medicine.
The purpose of this article is to identify the implications of commonly held ideologies within theories of child development. Despite critiques to doing so, developmental theory assumes that children’s bodies are unitary, natural and material. The recent explosion of neuroscience illustrates the significance of historical, social and cultural contexts to portrayals of brain development, offering the opportunity for a critical departure in thinking. Instead, this neuroscience research has been taken up in ways that align with biomedical traditions and neoliberal values. This article uses a critical discursive approach, supported by Haraway’s ideas of technoscience, to analyse a population-based early child development research initiative. This initiative organises a large-scale surveillance of children’s development, operating from the premise that risks to development are best captured early to optimise children’s potential. The analysis in this article shows an intermingling of health and economic discourses and clarifies how the child is a figure of significant contemporary social and political interests. In a poignant example of technobiopolitics, the collusion between health research, technologies and the state enrols health professionals to participate in the production of children as subjects of social value, figured as human capital, investments in the future, or alternatively, as waste. The analysis shows how practices that participate in what has become a developmental enterprise also participate in the marginalisation of the very children they intend to serve. Hence, there is the need to rethink practices critically and move towards innovative conceptualisations of child development that hold possibilities to resist these figurations.
Despite a paucity of scientific evidence, complementary and alternative medicines have been found to give rise to feelings of control, empowerment, and agency. These healing experiences call for the development of analytical frameworks beyond biomedical ideas of scientific effect. This article is premised on a phenomenological understanding of embodied subjectivity as paving way for more nuanced understanding into experiences of healing. As such, this article contends that ill health transcends the biomedical body. Healing experiences are also entwined with the values and ideals that are normalized in the complementary health sphere. Discourses of health and wellness thus also play a role in the generation of healing experiences. I draw on qualitative research with clients and practitioners involved in complementary and alternative medicines in England. I will first introduce phenomenological ideals of the body, and the methods underlying the data that are drawn on. I will then turn to interviewee perspectives on the interconnectedness of the mind and the body, before outlining client experiences of alternative health practices. I argue that ideals, such as awareness, that are emphasized in the holistic health domain are important for the generation of healing experiences. Healing experiences also, however, emerge through the caring touch of trusted practitioners. This article will finally turn to the intersections between embodied experience and social inscription.
Proponents of complementary and alternative medicine argue that these treatments can be used with great effect in addition to, and sometimes instead of, conventional medicine, a position which has drawn sustained opposition from those who advocate an evidence-based approach to the evaluation of treatment efficacy. Using recent survey data from the United Kingdom, this article seeks to establish a clearer understanding of the nature of the public’s relationship with complementary and alternative medicine within the general population by focusing on beliefs about the perceived effectiveness of homeopathy, in addition to its reported use. Using recent data from the United Kingdom, we initially demonstrate that reported use and perceived effectiveness are far from coterminous and argue that for a proper understanding of the motivations underpinning public support of complementary and alternative medicine, consideration of both reported use and perceived effectiveness is necessary. We go on to demonstrate that although the profile of homeopathy users differs from those who support this form of medicine, neither outcome is dependent upon peoples’ levels of knowledge about science. Instead, the results suggest a far greater explanatory role for need and concerns about conventional medicine.
Many studies suggest that health benefits from engaging with the creative arts, but explanations of the association remain tenuous. This article explores both creativity and health from an anti-humanist perspective and develops a Deleuze-inspired analysis to supply the theoretical framework for creativity and health. In this view, creativity is an active, experimenting flow within a network or assemblage of bodies, things, ideas and institutions, while health is understood as the capacity of a body to affect and be affected by this assemblage. It is consequently unsurprising that there is a relationship between creative activity and health. This analysis is used to explore how creative production and reception can affect health, and to assess the implications for sociology and for arts in health-care practice.
Discourse analysis following the work of Michel Foucault has become a valuable methodology in the critical analysis of a broad range of topics relating to health. However, it can be a daunting task, in that there seems to be both a huge number of possible approaches to carrying out this type of project, and an abundance of different, often conflicting, opinions about what counts as ‘Foucauldian’. This article takes the position that methodological design should be informed by ongoing discussion and applied as appropriate to a particular area of inquiry. The discussion given offers an interpretation and application of Foucault’s methodological principles, integrating a reading of Foucault with applications of his work by other authors, showing how this is then applied to interrogate the practice of vocational rehabilitation. It is intended as a contribution to methodological discussion in this area, offering an interpretation of various methodological elements described by Foucault, alongside specific application of these aspects.
Heteronormative assumptions can negatively influence the lives of young gay and bisexual men, and recent sociological analyses have identified the negative impacts of heteronormativity on heterosexual men (e.g. ‘fag discourse’ targeted at heterosexual adolescents). However, insights into how heteronormative discourses may be (re)produced in clinical settings and how they contribute to health outcomes for gay, bisexual and heterosexual men are poorly understood. This analysis draws on in-depth interviews with 45 men (15–25 years old) and 25 clinicians in British Columbia, Canada, to examine how heteronormative discourses affect sexually transmitted infection testing. The sexually transmitted infection/HIV testing experience emerged as a unique situation, whereby men’s (hetero)sexuality was explicitly ‘interrogated’. Risk assessments discursively linked sexual identity to risk in ways that reinforced gay men as the risky ‘other’ and heterosexual men as the (hetero)normal and, therefore, relatively low-risk patient. This, in turn, alleviated concern for sexually transmitted infection/HIV exposure in heterosexual men by virtue of their sexual identity (rather than their sexual practices), which muted discussions around their sexual health. The clinicians also positioned sexual identities and practices as important ‘clues’ for determining their patients’ social contexts and supports while concurrently informing particular tailored clinical communication strategies. These findings highlight how men’s experiences with sexually transmitted infection/HIV testing can (re)produce heteronormative assumptions and expectations or create opportunities for more equitable gendered relations and discourses.
Against a backdrop of growing concern for patient safety and service quality, modern health-care systems are witnessing a proliferation of improvement initiatives. The impact is often variable, however, and a key theme to emerge from evaluations of these efforts is a recognition of the effects of local context on the success or otherwise of an intervention. However, the ‘context’ tends to be understood in terms of higher order issues such as structure, culture and leadership. This article explores a dimension of context not typically taken into account in the health-care improvement literature: the infrastructural context. Many quality improvement interventions hinge on the introduction of artefacts to support behavioural change in the workplace. Despite calls from scholars of technology in practice for a greater acknowledgement of the role of such mundane artefacts in supporting the organisation of health-care work, they are rarely considered in these terms in evaluations of improvement efforts. In this article, I argue that understanding the potential generative effects of artefacts for quality improvement purposes requires an understanding of their ‘affordances’ and how these relate to the socio-material infrastructure into which they are to be introduced, and/or the technologies they are designed to replace. Integrated care pathway implementation is examined to illustrate this position. Drawing on qualitative case studies of integrated care pathway development processes undertaken in the UK National Health Service and ethnographic research on the international care pathway community, I consider the infrastructural reasons behind the challenges of making pathways work in organising health care, and why, contrary to the aspirations of their proponents, they often appear to increase rather than decrease paperwork.