Health: An Interdisciplinary Journal for the Social Study of Health,Illness and Medicine

When it comes to depicting ill or disabled children, the ethics of representation becomes increasingly complex. The perception of photographs as voyeuristic and objectifying is of particular concern here and resonates with widespread fear about the eroticisation, mistreatment and exploitation of children. Although these fears are reasonable, this view does not take into account the voice and agenda of the photographic subject, disregards the possibility of recognition and the participatory nature of photography. In this article, I focus on photography as a collaborative practice. I analyse two photographic projects by photographers/mothers that document their ill and dying daughters – Lesley McIntyre’s photographic essay The Time of Her Life (2004) and Elisabeth Zahnd Legnazzi’s Chiara A Journey Into Light (2009). Illness in these projects is not experienced in isolation. Instead, the photographs and accompanying texts provide a space to engage in a dialogue which is built on the interdependency of all the participants of the photographic act – the photographer, the subject of the photograph and the viewer. My aim is to question how these projects construct experiences and articulate private expressions of illness and how the photographs enhance and/or challenge the mother–daughter bond. Alan Radley’s critical analysis of representations of illness, Emmanuel Lévinas’s and Maurice Blanchot’s perspectives on ethical philosophy and visual social semiotics approach developed by Kress and Van Leeuwen provide a guiding framework for this study.

Endometriosis, as a widespread gynecological condition, affects an estimated 1 in 10 women and yet has a worldwide average diagnosis length of 7.5 years. Causing incapacitating pain, among other associated manifestations, the condition severely impacts on women’s lives. This article uses online survey data to investigate how pre-diagnosis endometriosis pain is conceptualized and articulated in order to explore communication challenges reported in early consultations that can potentially be seen to play a role in diagnosis delay. The findings of this study indicate that women feel that they do not have the appropriate tools to describe their pain and, in many instances, feel dismissed therefore prolonging diagnosis. The article finds that the majority of the pain descriptors identified use elaborate metaphorical scenarios to convey the intensity of the pain and concludes with some reflections on the issue of metaphorical language in endometriosis pain communication practices while calling for interdisciplinary work in order to devise appropriate tools for endometriosis pain communication.

The importance of identity in smoking cessation is increasingly becoming recognized by researchers. This study is the first in-depth longitudinal qualitative investigation of identity change processes among smokers who intend to quit. Participants’ accounts of smoking, attempts to quit and sense of identity were explored over time to examine identity continuity and change. Ten smokers with a quit intention were interviewed three times, approximately 1 month apart, and approached for follow-up 2 years later. Data from 30 in-depth interviews were analyzed using the interpretative phenomenological analysis approach. Two themes of identity change processes are presented: “Identity transition makes it easier to quit” and “Identity conflict resolution is needed when quitting is unsuccessful or not attempted.” Identity transition toward the identity of nonsmoker appeared to be facilitated by permeable identity boundaries, a continuous sense of identity, and a sense of mastery of quitting. Conflicted smoker identities were observed among participants who continued to smoke, along with barriers that appeared to prevent them from identifying with nonsmoking. Among these participants psychological (e.g. using downward comparisons with worse-off smokers) and behavioral strategies (e.g. hiding smoking from others) were seen that may serve to resolve identity conflict and protect a positive sense of identity. Our findings suggest that transition toward a nonsmoker identity may be necessary for successful quitting. Future research investigating ways to help smokers to perceive themselves increasingly as nonsmokers appears indicated.

Socio-cultural rigidities regarding the shape and size of a woman’s body have not only created an urgency to refashion themselves according to a range of set standards but also generated an infiltrating sense of body dissatisfaction and poor self-esteem leading to eating disorders. Interestingly, through an adept utilisation of the formal strengths of the medium of comics, many graphic medical anorexia narratives offer insightful elucidations on the question of how the female body is not merely a biological construction, but a biocultural construction too. In this context, by drawing theoretical postulates from Susan Bordo, David Morris and other theoreticians of varying importance, and by close reading Lesley Fairfield’s Tyranny and Katie Green’s Lighter than My Shadow, this article considers anorexia as the bodily manifestation of a cultural malady by analysing how cultural attitudes regarding body can be potential triggers of eating disorders in girls. Furthermore, this article also investigates why comics is the appropriate medium to provide a nuanced representation of the corporeal complications and socio-cultural intricacies of anorexia.

Taking a social model of disability approach, this article explores how disabled people negotiate barriers in the large, modern hospital settings typically found in complex healthcare systems. While there is evidence of intractable barriers in the United Kingdom’s National Health Service, little is known about the actions disabled people take in the face of barriers and the immediate effects of doing so. Analysis of data from a qualitative study of disabled people’s healthcare encounters is presented. This draws on the concept of threats to embodied well-being to understand how disabled people perceive barriers and the influence this perception has on barrier negotiation. It demonstrates that some barriers are unique to healthcare and that these place disabled people in situations where their well-being is threatened. Despite these situations being inherently disempowering, disabled people are forced to take whatever action they can to protect the embodied self. We theorise that barriers are created inadvertently by the design, organisation and healthcare practices characteristics of modern hospital settings. Effective barrier removal requires understanding not only their impact on disabled people’s embodied well-being, but also the political, policy and social relations implicated in their creation.

In this article, we focus on developing a critical sociology of ‘cultural and linguistic diversity’ as evident in cancer care praxis, drawing on the perspectives of cancer care health professionals. Set within the context of increasing efforts on the part of healthcare providers to ‘accommodate difference’ and ‘incorporate diversity’, we aimed to utilise participants’ accounts of practice to ask: how do we and how should we think about and operationalise ‘culture’ (if at all) in cancer care settings. Drawing on eight focus groups with doctors, nurses, allied health staff and multicultural community workers, here we explore their accounts of: othering and over-simplification; the role of absences in biographical reciprocity; intimacy, care and carelessness; and entanglements of culture with other aspects of the person. Based on their accounts, we argue for a broadening of the examination of the nexus of culture and care, to focus on the problematics of othering, intimacy, reciprocity and complexity.

The contemporary health subject, often described as a new, empowered patient, is not simply a character in a story of progress toward knowledge and power, away from credulity and passivity. Before the 20th century, and the assertion of a medical system that became frankly paternalistic, laypeople adjudicated on many matters of illness and its treatments. That is, 18th- and 19th-century health subjects were empowered too, and studying them, especially as consumers of health products, helps us develop a more nuanced account of our current medico-commercial selves. Comparing historical advertisements for “patent medicines” and contemporary direct-to-consumer ads for prescription pharmaceuticals, this essay contributes to such an account. It identifies strategies that drug marketers have deployed over centuries to persuade consumers to buy their products, and it tracks a rhetoric of interpellation in advertisements that not only address but also constitute health subjects. The goal of the analysis is to increase alertness to our own susceptibilities to pharmaceutical ads and adjacent rhetorics of health and illness.

This article looks at chronic crisis on an empirical example of radiation embodiment by survivors of a nuclear disaster. Developing further the work of Henrik Vigh, this article argues that chronic crisis is conflictual in nature, where some individuals fully embrace it, while others reject it. A total of 16 in-depth interviews were conducted with survivors of the Chernobyl nuclear disaster from Belarus who were below 18 years in 1986 and born in or after 1986. It is shown that survivors do not consider themselves affected, when they argue against social stigma imposed by others and when development discourse in relation to post-communist health care is used as a background against which nuclear victimhood can be argued. It is also demonstrated that survivors do consider themselves affected, when they embrace disaster temporality and victimhood and argue against narrow scientific definitions of victimhood which downplay a variety of health conditions attributed to the disaster. This article concludes that chronic crisis may not always be transformative, but reproduce the existing inequalities. It contributes to the anthropology of disaster and the anthropology of suffering by bringing together scholarship in feminist theory of disability and critical perspectives on development.

In recent years, it has become increasingly important to understand the global circulation of healthcare innovations in nations’ attempts to solve contemporary health challenges. This article is a systematic review and meta-ethnography–inspired analysis that explores the global circulation of health-related standards, protocols, procedures, and regulations, or what we term health-promoting infrastructures (HPIs). The notion of HPIs is defined as built networks that allow for the circulation of health expertise with the intention of promoting solutions that address global health problems. We conducted systematic searches in six relevant electronic databases and ended up with a set of 13 studies. The review shows that it takes arduous work to prepare and facilitate the travel of HPIs and to mold them into meaningful local forms. In conclusion, we argue that HPIs can helpfully be thought of as scripted forms, which are globally available in always sited efforts to address specific problems.