SOCIOLOGY OF HEALTH & ILLNESS

Patient-Generated Data as Interventions in Doctor-Patient Relationships? Negotiating (Un)Invited Participation in Medical Consultations
Augst AK, Lämmerhirt D and Schubert C
Health data generated by apps and devices are increasingly popular and expected to affect various aspects of doctor-patient relationships. No longer confined to medically authorised and certified health technologies, a range of biomedical data-from heart rate to blood pressure or oxygen saturation-are captured and processed by consumer health devices. This article outlines different responses of physicians to patients collecting data with popular consumer devices and considers how the data may challenge or reify medical authority. Based on semi-structured interviews with doctors and chronically ill patients in Germany from 2021 to 2023, we compare cases from diabetes, sleep disorders, cardiovascular conditions, obesity and ME/CFS and explore when, how and for what reasons different medical specialists consider patient-generated data (PGD) from consumer devices in outpatient settings. Their response registers vary: whereas some physicians reject PGD that seem to compete with their diagnostic activities, others tolerate the data (collection), whereas still others more readily include them into their diagnostic practices. This suggests nuanced strategies for navigating the demarcation between accepting or rejecting 'uninvited' participation through PGD from consumer apps and devices.
The Iatrogenic Consequences of Medicalising Grief: Resetting the Research Agenda
Gurley-Green S, Cosgrove L, Kostic M, Koa L and McPherson S
When the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) was published in 2013, there was a firestorm of controversy about the elimination of the bereavement exclusion. Proponents of this change and of the proposed "complicated grief" designation believed that this change would help clinicians recognise major depression in the context of recent bereavement. Other researchers and clinicians have raised concerns about medicalising grief. In 2022 "prolonged grief disorder" (PGD) was officially included in the DSM-5-TR in the trauma- and stressor-related disorders section. Not surprisingly, there has been a push to identify biomarkers and to use neuroimaging to identify the neurobiological basis of PGD. Some researchers have even suggested that PGD is a 'reward circuit disorder' akin to addiction and that naltrexone, an opioid antagonist, may be a promising treatment. The purpose of this paper is to show how medicalising grief reinforces a research agenda dedicated to the search for pharmaceutical and psychological 'magic bullets.' Following George and Whitehouse (2021), we propose that an ecopsychosocial approach-one that incorporates environmental and contextual factors-is needed.
Latino adolescents' experiences of residential risks on social media and mental health implications
Campos-Castillo C, Groh SM and Laestadius LI
Despite alarms raised that adolescents' social media use can aggravate the harmful impact of residential risks (e.g. local violence) to their mental health, the mechanisms are poorly understood. To better understand potential mechanisms, we interviewed Latino adolescents living in a hypersegregated U.S. city, for whom social media may aggravate existing inequalities in residential risks to their mental health. Through an abductive analysis, we identified two processes suggesting how social media can amplify the deleterious impact of residential risks to their mental health. We refer to the first as additive, whereby social media heightens awareness of residential risks. The second is extension, whereby social media lengthens one's risk awareness, speeds up potential for risk awareness and multiplies who may become aware. We found evidence suggestive of parallel processes yielding diminution, whereby social media can minimise the deleterious effects of residential risks via adding and extending exposure to mental health resources, like collective efficacy. Further, the potential for extension (to both risks and resources) appears limited because social media practices (e.g. reposting, seeking viral attention) can foster indifference. Findings suggest the need to consider how adolescents activate resources via social media to avoid overstating its negative impact on mental health.
Between epistemic injustice and therapeutic jurisprudence: Coronial processes involving families of autistic people, people with learning disabilities and/or mental ill health
Ryan S, Ribenfors F, Mikulak M and Coles D
Understanding how and why someone dies unexpectedly is key to bereaved family members. The coronial process in England investigates instances where the cause of death is unknown, violent or unnatural and/or occurred in state detention. Families are held to be at the centre of this process and the coroner's role has extended to concern about therapeutic jurisprudence, that is, how legal processes can minimise negative consequences for participants without jeopardising due process. Therapeutic jurisprudence involves unresolved tensions, however, and an epistemic power imbalance. Within the inquest, knowledge is produced, evaluated and contested, and epistemic privilege may be unevenly distributed. The inquest is also a process that, as we demonstrate, requires epistemic courage and resistance on the part of families. Families with relatives who are autistic, have learning disabilities and/or mental ill health can experience epistemic and structural injustice before an unexpected death which makes the distinctiveness of their experiences important to understand. Here, we report on a qualitative interview project which focused on how bereaved families experience the coronial process after their relative died in receipt of health and/or social care support.
Navigating the Limits of Diagnosis: Young Adults' Experiences of Chronic Living
Harper I, Kenny K and Broom A
Young adults living with chronic illness often experience considerable uncertainty across the emotional, cultural and medical spheres of their everyday lives. The process of seeking, receiving and reckoning with a diagnosis has frequently been an in-road for qualitative examinations of these experiences. As a result, the biomedical diagnosis has often taken centre stage in research concerning how uncertainty is managed and/or more stability is found. However, the significance of diagnosis can shift over time, and in many cases, the promise of diagnosis deteriorates as life unfolds. This study draws on a series of in-depth qualitative interviews with 33 young adults (ages 19-29) living with a range of chronic illnesses, which include auto-immune illnesses, fatigue syndromes and neurological conditions. Undertaking an inductive interpretative analysis based on constructivist grounded theory, we examine the role and meaning of diagnosis for our participants and find that they iteratively de-centre diagnosis in various circumstances. We suggest that while the way young adults manage chronic illness may involve seeking a diagnosis, navigating the shortcomings of diagnosis takes a significant emotional toll, and a failure to recognise this work is one important way that the experience of chronic illness when young can be misunderstood.
The Golden Ticket? Widening Access in UK Medicine and the Making of an Emotional Proletariat
Ashley L
'Widening Access' in UK medicine seeks to improve access on the basis of socioeconomic background (SEB). However, evidence has emerged of 'socially stratified' careers, as doctors from less advantaged backgrounds are more likely to train in less competitive specialties, such as psychiatry or primary care. These patterns have been welcomed to date as this improves access to care, yet less positive consequences have been overlooked. Based on in-depth interviews (n = 54) with medical students, qualified doctors and medical educators from less advantaged backgrounds (n = 38), this article asks how values influence medical careers, for what this can tell us about the causes of social stratification and how this informs status hierarchies within the profession. Using the work of Bourdieu, we find that while participants value empathy and compassionate care they believe both are less valuable when securing more competitive careers, and may signal less skill. This helps explain why doctors from less advantaged careers may prefer more community orientated roles, which are often less competitive, and why these specialties may also attract less status and respect. A related risk is that doctors from less advantaged backgrounds are over-represented in areas imposing the highest emotional demands to become the profession's 'emotional proletariat'.
From Cells to Organoids: Sociological Considerations for the Bioengineering of Human Models
Bea S and Hinterberger A
By examining the laboratory practices behind designing and crafting organoids-miniature, three-dimensional cellular structures that replicate organ functions-we highlight a critical shift in biomedical research. Over the past 16 years, advances in stem cell research have transitioned from generating stem cells to utilising these cells in building sophisticated organ models and bioengineered tissues. This transition represents a significant move from the 'what' of cell creation to the 'how' of constructing and interpreting three-dimensional human models. Through ethnographic research (including observations and interviews) in Europe and North America, we explore how organoids are constructed and the underlying logic driving their development. Our analysis underscores the growing importance of these in vitro models for human health, urging a sociological examination of their 'near human' status. We argue that understanding the implications of this shift-particularly how it influences perceptions of human representation and diversity in biomedical research-requires critical scrutiny from sociologists of health and illness. This paper aims to address the urgent need to investigate not just the experimental challenges but also the socio-political dimensions of using organoids as proxies for human physiology.
A Political-Economic Model of Community and Societal Health Resources: A 92-Country Global Analysis
Omidvar Tehrani S, Perkins DD and Mihaylov NL
The quality and access to healthcare systems depend on community health resources, infrastructure, and funding; however, a significant disparity in these resources persists globally. The effectiveness of national health systems depends on a balanced approach to health spending, access to facilities and a skilled local health workforce. What accounts for country-level differences in those critical community and societal health resources? We proposed and tested a model that leverages political and socioeconomic factors to predict various health resources and services in countries. Data, including community health training, research, and support, universal health coverage, healthcare infrastructure, and per capita health expenditure, were collected and analysed by statistical methods, like bivariate correlations and hierarchical multiple linear regressions from 105 countries. Countries with more grassroots activism, fiscal decentralisation, freedom, and globalisation and less perceived corruption and inequality had more community and societal health resources. In multivariate analyses, stronger community health training and research is associated with the globalisation index, freedom score, government fiscal decentralisation, and income inequality. The strongest predictor of health insurance coverage and hospital beds was the country's population education index, and of nurses and midwives-per-capita and health expenditures-per-capita was GDP-per-capita. These insights could guide policymaking to reduce global health inequalities.
Medicalising agents? Teachers' uncertainty and emerging expertise in the age of inclusion policy and medicalisation in Israel
Plotkin-Amrami G, Feniger Y and Umansky Y
Attention deficit hyperactivity disorder (ADHD) is a paradigmatic case for childhood medicalisation. Critical studies of medicalisation have pointed to the increasing clinical role of schools, with teachers tending to rely on medical treatment of students with ADHD and are perceived as a primary source of diagnostic information. Based on 27 semi-structured interviews with teachers working in two Israeli elementary and middle schools, this research explored how teachers mediate the medicalisation process and understand their responsibilities in the classroom amidst the emphasis on inclusion in contemporary Israel. We found that teachers offer a wide range of explanations of the disorder and its prevalence, and their attitudes to medication are ambivalent. We argue that teachers develop pedagogical (lay) expertise in the field of ADHD in parallel with and in opposition to medical solutions. Such expertise is based on practical experience and close interaction with students. A top-down ideological imperative of inclusion, combined with uncertainty about ADHD, has generated a bottom-up set of preformative practices of 'containment' of troubled students. Teachers' emerging knowledge and practices raise questions about the relationship between medicalisation, policy, expertise and the pragmatic value of medical categories when applied outside the medical establishment.
Navigating the Lay Referral System for Treatment-Seeking Decisions During Illness in the Digital Age: A Qualitative Study of Adults Living in Slums in Nigeria
Onuegbu C, Harlock J and Griffiths F
Interaction with a lay referral system (informal networks that provide health advice during illness) influences the treatment-seeking decisions of individuals with perceived healthcare needs. We examined how this occurred in urban slums in Nigeria with scarce formal healthcare and unstable social networks. Using existing theories of social networks and lay referral, we examined the use of these systems for treatment-seeking decisions in slums, including the use of digital technologies. We interviewed 30 adults (aged 18-64) of diverse age, gender, network size and use of digital technologies for health advice in two Nigerian slums. We analysed the data using a thematic inductive-deductive approach. Lay referral was multidimensional: discussion of illness during daily bonding, social demonstration of self and purposeful exchange of support. People limited lay referrals to a few family members and friends, avoiding wider interactions due to mistrust. Use of online sources was scarce due to limited access to smart devices and low digital health literacy. Lay referral motivated timely care seeking but also facilitated unhelpful advice. Slum residents were agentic in their use of their lay referral system. The effectiveness of their agency may be improved if trusted and reliable health advice sources are available in addition to their social network.
Family planning policy and gender in Nigeria: A thematic analysis of the government's health policy perspective
Amiesimaka OI and Payam S
Family Planning (FP) lets people control the number and timing of child-births through using contraceptives and/or restoring fertility. Nigeria has several FP policies for managing its population, yet contraceptives usage remains suboptimal despite high FP awareness, suggesting that several factors might be inhibiting FP uptake. The literature spotlights gender as factoring into FP use due to Nigeria's patriarchal society, with men positioned as gatekeepers to women's sexual/reproductive health/expression. Therefore, we investigate if/how gender is considered in Nigeria's FP policies. We thematically analysed the 'National Reproductive Health Policy', 'National Family Planning Communication Plan' and 'Nigeria Family Planning Blueprint (Scale-Up Plan)', from a critical realist viewpoint. Our analysis generated an overarching theme-'A Gendered Human Right', with three further themes: Women's Right-Women's Issue', 'Adolescent Girls-not left out' and 'Men's Right as Supporters'. FP was portrayed as the right of women, adolescents (particularly girls ≥ 10 yrs) and men. It was highly feminised, with women, not men, majorly shouldering the FP responsibility and women's FP access was presented as hindered by men. Moreover, we advance recommendations for optimising Nigeria's policies to address gender imbalances hampering women's FP access and uphold the rights of all people, women/girls especially.
Genetics, emotion and care: Navigating future reproductive decisions in families of children with rare genetic conditions
Coveney C and Salem B
Little is known regarding the future reproductive decision-making of parents of children with rare genetic conditions. Our research draws on data from an online survey and qualitative photo-elicitation interviews with families living with Noonan Syndrome. We demonstrate how genetic knowledge and prenatal genetic testing become embedded in reproductive practices. Yet the idea of using selective genetic technologies to influence reproductive outcomes remains highly emotive. Our analysis reveals that for these parents, the rationalities of reproduction, although technologised and biomedicalised, remain centred on caring for their disabled child. Genetic subjectivities become entangled with responsibilities of care-giving and emotion tied to the realities of living with disability. We argue that for these parents, reproductive decisions are relational and affective, situated within families and communities and shaped by access to emotional, financial, physical and temporal resources. Our findings provide new insights into the ontologies of selective genetic technologies and reproductive governance in families living with disability.
Positioning comfort measures in antenatal counselling for periviable infants
Carroll K, Thorvilson M and Collura C
Caring for the extremely premature infant born in the grey zone of viability is the most difficult area of neonatal medicine. Little research has been done on antenatal communication between neonatologists and parents anticipating the birth of a periviable infant. This article analyses 25 antenatal consultations between neonatologists and parents in one Midwestern hospital in the United States of America. It explores how neonatologists position comfort care as one of two predominant care trajectories for extremely premature infants born into the grey zone of viability. We found comfort care featured minimally in and was often marginalised by neonatologists' language. The two dominant discourses contributing to this were acute medicine's life-saving capacity and a limited temporal window marked by gestational age where comfort measures were deemed appropriate. Antenatal consultations framed by shared decision-making could be approached as a form of care characterised by a relational openness and responsiveness to parents' views on care. This asks neonatologists to enter antenatal consultations for periviability without knowing ahead of time which care trajectory will necessarily call one's attention or the particular response one should take, thus highlighting the skills of reflexivity in addition to an attentiveness and openness towards those receiving care.
Engaging with discursive complexities in mental health accessibility: Implications for acquired brain injury
Lin NXY
The psychosocial needs of people with acquired brain injury (ABI) have been neglected based on ableist assumptions of incapability to participate in mental health treatment. Although people without disabilities benefit from evidence-based mental health supports, these treatments remain inaccessible for those with disabilities after ABI. Discursive simplifications used in dominant conceptualisations of health and disability may maintain this inaccessibility. This paper examines the role of discursive constraints in concealing the complexities of ABI recovery, undermining the gradients of mental health exclusion among different ABI subpopulations, and muddying possibilities for enhancing mental health accessibility. An alternate discourse that challenges disabling societies in service of centring the whole person is proposed. Discursive opportunities are thus created by conceptualising the objective and subjective dimensions of disability as intermeshed, providing both the motivation to incentivise mental health inclusion, as well as a method to achieve it. By recognising the unavoidable impact of bodily impairments on social participation, participatory ideals can be actualised by accommodating ABI-related disabilities in mental health treatments. The possibilities for transformative research and practice are illuminated through examples of mental health treatments that have been preliminarily adapted using accommodations, and a research agenda for realising these possibilities is proposed.
Health inequalities and contemporary youth: Young people's accounts of the social determinants of health in an 'austere meritocracy'
Fergie G, Smith K, Vaczy C, Mackenzie M and Hilton S
Young people coming of age amidst widespread socioeconomic uncertainty have a unique vantage from which to interpret how social, economic and environmental factors might influence health and the generation of health inequalities. Despite this, only a small number of existing studies of 'lay' understandings of health inequalities have focused on young people. This arts-based qualitative study builds on that body of research, in the context of the UK, to explore how young people make sense of health inequalities. Across two sites, Glasgow and Leeds, six groups of young people (39 in total) took part in online workshops to explore their perspectives. Throughout they engaged with population health research evidence; contributed to group discussions and responded creatively, via visual and performance art and by articulating their own views and experiences. In this paper, we explore how individual and structural explanations for health inequalities emerged, employing concepts from sociological studies of youth to shed light on these accounts. In particular, we argue that the concept of 'austere meritocracy', the persistence of narratives of aspiration and hard work as key to success against an increasingly hostile socio-economic backdrop, helps explain young people's perspectives on health inequalities in the UK.
COVID time: Temporal imaginaries and pandemic materialities
Butler E and Lupton D
Since the advent of the COVID-19 pandemic, several ways of understanding time have emerged: what we may call 'COVID time'. Based on 40 qualitative online interviews in 2022 with Australians living across the continent, this article examines how people situated themselves and COVID-19 in historical time. It further explores how material aspects, place and space (or "pandemic materialities") factored into lived experiences and temporal imaginaries. We focus on how time-related concepts such as synchronisation and the definition of crises and events are interrelated in the participants' understandings of COVID as either over or a continuing crisis. The sociomaterial dimensions that served to alert people to risk and encourage them to engage in preventive action are identified as ways in which COVID time was experienced, remembered, understood and imagined. While some respondents claimed that the present moment was 'post-COVID', for others, the pandemic was far from over in 2022 and indeed stretched into the future. We use a sociomaterial lens to show how respondents portray the 'temporal technologies' and 'objectifications' of the event of COVID-19-the tangible materialisations of its temporal status as either relegated to the past or continuing as a mode of present and future crisis.
Bringing the group back in: Social class and resistance in adolescent smoking
McEvoy O and Layte R
Absolute prevalence of tobacco smoking has fallen in recent decades but inequalities by socioeconomic position (SEP) persist. Adolescence is a critical period for smoking initiation and habits formed during this period likely continue into adulthood. Explanations for inequalities in adolescent smoking have tended to focus on individualistic theories based on differentials in knowledge and psychology. These have been criticised for their blindness to processes of social stratification and social context that influence smoking behaviours. Based on previous social theories, we put forward, and test empirically, two potential structural explanations for inequalities in smoking, using nationally representative longitudinal cohort data on 6039 Irish young people aged 9-18 years. Descriptive analyses confirmed the adverse SEP gradient in smoking prevalence as well as SEP gradients in variables representing individual-level characteristics and structural-level explanations. Despite lower self-esteem being associated with a higher likelihood of smoking, there was no significant indirect pathway between SEP and smoking via self-esteem. Path analyses found that differentials in exposure to parental smoking and levels of oppositional values mediate the relationship between SEP and smoking. Our results favour structural and group-based explanations for inequalities, that is, the 'smoking exposure' and 'social resistance' models, over explanations based on individual psychology.
Social support for the chronically ill during lockdown. Qualitative research in the COVID-19 pandemic
Virole L, Gabarro C and Ricadat E
Chronic illness requires a web of actors, both professional and familiar, who constitute the support network of the chronically ill. This article aims to analyse how the COVID-19 pandemic has impacted on the delicate balance of these supports. Qualitative research was conducted among people with four types of chronic diseases in France: cystic fibrosis, kidney disease, haemophilia and mental disorders. Data on social support was collected using an innovative methodology combining semi-directive interviews (n = 54) and drawings (n = 32). During the first French lockdown (March-May 2020), the chronically ill were mainly supported by the usual support actors of their primary network: spouse and/or family. However, the COVID-19 health crisis has led to several changes in their support network; health-care professionals diversified their support roles and new supporting actors emerged, especially non-human entities and patient organisations. The chronically ill have received an interweaving of emotional, instrumental and informational, formal and informal and human and non-human support. Our study highlights the multiple and dynamic ties between these types of support and argues in favour of a comprehensive approach to social support of the chronically ill, both in social science theory and in practice of care.
Institutional, humane, therapeutic: Towards an understanding of caregiver violence through third sector violence prevention discourse in Finland
Sointu L
Violence in family caregiving, once a social taboo, is now emerging as a topic of scientific inquiry. Engaging with a non-normative approach to care and critical reflection on research of abusive caregiver behaviour and elder abuse, this study argues that as caregiver violence is increasingly addressed in research, it is crucial to understand it as a complex issue within its social context. The study adds to this understanding by conducting a discourse analysis of violence prevention programmes in Finland, where third sector organisations have taken the initiative in addressing caregiver violence. Based on analysis of project materials, media texts and expert interviews related to two such violence prevention programmes, the study illuminates how caregiver violence is made intelligible through a combination of three kinds of understanding: institutional, humane and therapeutic. It is suggested that these understandings offer a way forward in thinking about the complex, sensitive topic of caregiver violence in sociological research on care.
The promise of artificial intelligence in health: Portrayals of emerging healthcare technologies
Watson A and Wozniak-O'Connor V
Emerging technologies of artificial intelligence (AI) and automated decision-making (ADM) promise to advance many industries. Healthcare is a key locus for new developments, where operational improvements are magnified by the bigger-picture promise of improved care and outcomes for patients. Forming the zeitgeist of contemporary sociotechnical innovation in healthcare, media portrayals of these technologies can shape how they are implemented, experienced and understood across healthcare systems. This article identifies current applications of AI and ADM within Australian healthcare contexts and analyses how these technologies are being portrayed within news and industry media. It offers a categorisation of leading applications of AI and ADM: monitoring and tracking, data management and analysis, cloud computing, and robotics. Discussing how AI and ADM are depicted in relation to health and care practices, it examines the sense of promise that is enlivened in these representations. The article concludes by considering the implications of promissory discourses for how technologies are understood and integrated into practices and sites of healthcare.
Surviving in the midst of 'Nowhere': Disrupting the conceptualisation of a maternity care desert
Archer RE
The conceptualisation of 'care deserts' has gained increased public attention in recent years. This paper engages a reproductive justice framework to investigate the (mis)alignment of a maternity care desert within a predominantly Black rural community in the United States. I draw on a case study of Gadsden County, Florida-a community that is perceived by its members to be a maternity care desert but that is not technically defined as one-to demonstrate how Black birthing people are cultivating a reproductive liberatory consciousness. Semi-structured interviews with birthing persons and reproductive health experts reveal three overarching processes-naming barriers to health equity, resisting health inequity and cultivating health equity-that characterise a reproductive liberatory consciousness, which I identify as an analytical tool to outline how local social actors are identifying structural constraints as well as developing strategies of communal care and resistance. This work contributes to sociological research on reproductive justice and health equity by exploring the limitations of 'desert' frameworks. Pointing to the need to carefully consider the mechanisms that actively disrupt and potentially transform spatial stratifications and inequities, this paper advances a new understanding of birthing space that captures the layered movements of those living within a perceived maternity care desert.