Bie Nio Ong and Caroline Sanders
Health service settings are increasingly installing digital devices to enable people to engage digitally with multiple processes, including automated ‘check-in’, as well as collecting feedback on experiences of care. In addition, policy is increasingly driving digital agendas to promote patient engagement with online services, management of health records and routine monitoring. While this tendency towards widespread digital diffusion has been viewed as a means of enabling greater empowerment of patients and improved responsiveness of services to ‘patient voice’, social scientists have provided critical insights on the use of digital technologies in practice. However, there remains limited understanding of the mechanisms and contexts for digital engagement. In particular, there is a need for further research on the sensory and spatial aspects of engagement that are integral to everyday use (or non-use) of technology in practice. This article reports new insights from detailed qualitative case studies utilising in-depth interviews with patients, carers and staff, in addition to ethnographic observations of different digital modalities and their usage in specific health care contexts. A sociomaterial approach and concepts of affective atmosphere and technogeography are drawn upon to analyse the role of touch and place in the collection of digital feedback in multiple waiting room settings for people with physical and mental health long-term conditions. The findings highlight how barriers to engagement varied by context such as particular concerns about privacy for those with mental health problems and physical and sensory barriers for those with physical impairments. The findings demonstrate how digital inequalities can play out in practice and have implications for the design and development of digital innovations and tackling inequalities that may be associated with implementation of new digital technologies in healthcare.
Guusje Bressers, Iris Wallenburg, Renée Stalmeijer, Mirjam oude Egbrink, Kiki Lombarts
Distributing responsibility for patient safety between individual professionals and organisational systems is a pressing issue in contemporary healthcare. This article draws on Habermas’ distinction between ‘lifeworld’ and ‘system’ to explore patient-safety culture in medical residency training. Sociological accounts of medical training have indicated that applying systemic solutions in patient-safety training and practice may conflict with residents’ needs. Residents would navigate safety systems to get their work done and safeguard learning opportunities, acting ‘in between’ the system and traditional processes of socialisation and learning on the job. Our ethnographic study reveals how residents seek to connect system and professional-based learning, and do them together in situated manners that evolve in the course of medical training. We reveal three themes that closely align with the residents’ developmental process of maturing during training and on the job to become ‘real’ physicians: (1) coming to grips with the job; (2) working around safety procedures; and (3) moving on to independence. A more explicit focus on learning to deal with uncertainty may enable residents to become more skilled in balancing safety systems.
Transition to parenthood after successful non-donor in vitro fertilisation: The effects of infertility and in vitro fertilisation on previously infertile couples’ experiences of early parenthood (open access)
Helen Allan, Ginny Mounce, Lorraine Culley, Olga van den Akker, Ruth Hudson
Recent social science research in the field of parenting following assisted conception has focused on the experiences of donor-assisted conception and surrogacy. This article draws from a study which explored the experiences of the transition to early parenthood in 16 heterosexual non-donor couples and includes a specific consideration of the experiences of men as they navigate this journey. We argue that these couples’ transition to early parenthood can be as complex and provisional as in other newer forms of family making as they struggle with an emerging identity as a parent after successful non-donor in vitro fertilisation following their experiences of infertility. Their family making is contingent upon their ability to work at integrating their experiences of infertility and in vitro fertilisation into their emerging identity as a parent. This struggle is prominent when they contemplate a further pregnancy. Considering a sibling causes them further uncertainty and anxiety because it reminds them of their infertile identify and the possibility of further in vitro fertilisation. We report novel findings about the experiences of this transition to parenthood: how couples’ identity as parents is shaped by the losses and grief of infertility and the anxiety of in vitro fertilisation. We argue that their struggle with an emerging parenthood identity challenges the normative, naturalised view of non-donor heterosexual in vitro fertilisation parenthood. Our work contributes to the work on identity in parenthood after in vitro fertilisation in an ongoing effort to understand how assisted technologies shape infertile parents’ lives. This article reports a small study with a relatively homogeneous sample recruited from one fertility clinic. Nevertheless as an exploratory study of an under researched topic, we discuss useful insights and ideas for further research with larger and more diverse samples.
Pleuntje Jellema, Margo Annemans, Ann Heylighen
Liminality captures the passing stages in transitioning from one sociocultural status to another. As its spatial dimension remains under-examined, we analyse this in experiences of people affected by cancer. We review liminality in cancer-related literature and juxtapose this with empirical material. Analysing interview data (with eight patients) and participant-made photos highlights why places may be experienced differently throughout a period of illness and how places of diagnosis and care ‘stretch’ across locations. We conclude that exploring liminality’s spatial dimension has implications for people ‘living beyond’ cancer, advances sociological understandings of (cancer) illness, and may inform healthcare facility design.
David Nguyen, Michael Arnold, Richard Chenhall
This paper describes how spatial understandings of the internet (i.e. the internet is a ‘space’) enable the persistence of marginalised medical practices. By tracing different accounts of the internet as space among practitioners and followers of diện chẩn – an emergent Vietnamese unregulated therapeutic method – we show how the logic of space circumscribes an alternative techno-social site for marginalised medical practices, transforms the private experience of being alone with technology into being-in-space, spiritualises the internet as a conduit of healing power, and mediates transnational health mobility among the Vietnamese diaspora. Drawing on interviews and ethnographic participation in Vietnam and the US, we demonstrate how the internet can be understood as non-biomedical milieu – a field of determination that conjoins heterogenous interventions on health-related eventualities outside of structured and institutionalised biomedical practices. This in vivo conceptualisation of the internet as space offers a point of convergence against the bifurcation of information as abstract and technology as concrete. A spatial conceptualisation highlights the embeddedness of health knowledge on the internet and shows how techno-social interrelations produce different spaces of multiplicity, which constitute a favourable milieu for medical practices outside of the biomedical institution to persist.
Xiaomei Cai, Orlando Woods, Quan Gao
This paper explores the affective formation of health and space/place through an examination of the affective and bodily practices of marathon runners in China. By elaborating the idea of “affective spaces of health”, we investigate not only how the affective potential of running bodies enables a therapeutic and individualised form of selfhood in response to China’s post-socialist transformation, but also how affective atmospheres might condition and discipline runners’ affective capacities for health. The paper therefore questions the simplistic association of health with particular qualities of place, and calls for research to focus on the affective, dispersed and fluid spaces of health instead.
Digital technologies have long impacted the field of health, causing fundamental changes for the geographies of the production, movement, and consumption of health. Despite this, there is limited health geography engagement with digital health, and an understanding of how digital health affects the spatialities of health remains underdeveloped. Here, using autoethnography, I reflect on personal encounters with digital health in the UK to initiate analytical attention into the geographies of digital health. I demonstrate that digital health technologies are interconnected and increasingly structure access to health, impacting the equality of health; and that digital health disrupts existing, and creates new, therapeutic landscapes and mobilities.
Over 80% of Canadian COVID-19 first wave deaths occurred in long-term care homes. Focussing on Ontario, I trace the antecedents of the COVID-19 crisis in long-term care and document experiences of frontline staff and family members of residents during the pandemic. Following Povinelli, I argue that the marginalization of both residents and workers in Ontario’s long-term care system over two decades has eroded possibilities for recognition of their personhood. I also question broader societal attitudes toward aging, disability and death that make possible the abandonment of the frail elderly.
In India, most healthcare expenses are patients’ out-of-pocket payments to private sector providers. Catastrophic health expenditures drive millions of families deeper into poverty. To save poorer households, hundreds of government-funded health insurance schemes have been introduced since the 2000s. These “demand side” schemes suggest that treatments in the private sector will be fully reimbursed. Fieldwork in one of India’s largest hospitals shows that GFHIs overpromise. GFHIs are designed to turn patients into co-creators of healthcare value, but instead they deepen individuals’ lack of market transparency. Poor patients pay the price for the state’s lack of trust in them.
Meg Stalcup & Yvonne Wallace
A drug overdose epidemic in North America has sped the expansion of harm reduction services. Drawing on fieldwork in Ottawa, Ontario, we examine forms of care among people offering and accessing these resources. Notably, our interlocutors do not always characterize harm reduction as caring for oneself. Thus, we differentiate between the ethics of care through which one enters desired subject positions, and anethical careful practices. Harm reduction is sometimes anethical, enacted through minor gestures that do not constitute ethical work but allow for its future realization.
Une épidémie d’overdose de drogue en Amérique du Nord a accéléré l’expansion des services de réduction des risques. En s’appuyant sur un travail de terrain à Ottawa, Ontario, nous examinons les formes de souci et soin parmi les personnes qui fournissent ces ressources et qui y ont accès. Tout particulièrement, nos interlocuteurs ne caractérisent pas toujours la réduction des risques comme le souci de soi. Ainsi, nous faisons la différence entre l’éthique du souci de soi et des soins par laquelle on entre dans les positions de sujets souhaitées, et les pratiques soignantes anéthiques. La réduction des risques est parfois anéthique, mise en œuvre par des gestes mineurs qui ne constituent pas un travail éthique mais permettent sa réalisation future.
Mette Bech Risør & Kjersti Lillevoll
Patients with chronic fatigue receive advice to improve symptom management and well-being. This advice is based on ideas of self-management and is conveyed during clinical assessment as “activity regulation.” Based on ethnographic fieldwork in a hospital clinic in Norway, we show how these patients attempt to demonstrate their competences and everyday concerns, and how the ideology of self-management frames the hope for recovery and crafts a subject with the ability to improve. Patients, however, linger between everyday social predicaments and ideals of healthy living, and are caught up in cultural models of care that deflect everyday concerns and agency.
Taking labor pains in childbirth care in Germany as a case study, I develop a practice-based notion of experience. Labor pains are sociomaterial experiences and effected actors that are shared and “worked with.” Drawing on fieldwork, I show an extensive repertoire of possible interventions used to deal with, and to co-enact, continuously shifting actorships of labor pains in childbirth care. These actorships include helpful tools, unproductive sensations, effective work, fruitless investments, products of bodily tension, and pure labor pains. Experiences such as labor pains are not only passively known, felt and done but also take active part in shaping (childbirth care) practices.
Isabelle L. Lange, Christine Kayemba Nalwadda, Juliet Kiguli &Loveday Penn-Kekana
Global health programs are compelled to demonstrate impact on their target populations. We study an example of social franchising – a popular healthcare delivery model in low/middle-income countries – in the Ugandan private maternal health sector. The discrepancies between the program’s official profile and its actual operation reveal the franchise responded to its beneficiaries, but in a way incoherent with typical evidence production on social franchises, which privileges simple narratives blurring the details of program enactment. Building on concepts of not-knowing and the production of success, we consider the implications of an imperative to maintain ambiguity in global health programming and academia.
In scholarship on cancer survivorship, “normality” is discussed as a strategy to restore and maintain continuity of identity for the person with cancer. I interrogate the strategic deployment of “normality” in what I define as ritual-like practices by drawing on 20 narrative interviews and 455 photographs produced by study participants. The findings explore normality as outcome (being normal), practice (doing normality), and ethical standard (aspiring to normality). They indicate how sociocultural scripts such as the cancer survivor identity and authentic selfhood inflect what it means to be a “normal” person with cancer with repercussions for recognition in lived experience.