Expressivist objections to prenatal screening and testing: Perceptions of people living with disability.

The 'expressivist objection' (EO) refers to the notion that using reproductive (genetic) technologies to prevent the birth of future would-be disabled people contain, and express, a negative valuation of life with disability. Whilst the EO has received increased attention in recent years in line with rapid technological and genomic developments, there remains scant research on how EO concerns are experienced and expressed by disabled people and their families, especially within and between impairment groups. Bringing together two studies-one with adults and family members living with genetic conditions (n = 62) and one with parents of children with Down's syndrome (n = 22)-we argue that disabled people and their families variously embrace, reject or rework the EO across contexts, and yet also frequently situate it within broad support for reproductive technologies. We present three key factors that mediate responses to the EO: (1) the nature of impairment and its integration within identity; (2) social and cultural contexts relating to disability and (3) the (individual and collective) imagined futures of disabled people. In so doing, we blend the conceptual architecture of medical sociology and disability studies, arguing that this allows us to accurately illuminate the nuanced responses of disabled people and their families.

Can a disability studies-medical sociology rapprochement help re-value the work disabled people do within their rehabilitation?

This paper draws attention to the health-related work that disabled people do when engaging with rehabilitation services. Medical sociology has a rich history of looking at the 'illness work' that patients do, while disability studies scholars have explored the cultural value placed upon paid work and the effects on social status of being unable to work. Yet, a longstanding froideur between these two disciplines, which have fundamentally opposed ontologies of illness and disability, means that neither discipline has attended closely to the rehabilitation-related work that disabled people do. The concept of 'adjusting' to illness highlights seemingly irreconcilable disciplinary differences. Yet this article argues that the notion of 'adjustment work' can elucidate the socio-political character of the work disabled people do in their rehabilitation, which could create a more substantial and sustainable dialogue on this subject between disability studies and medical sociology. To make this case, we discuss interview data from the Rights-based Rehabilitation project, which sought to explore disabled people's lived experiences of rehabilitation.

The Skagit County choir COVID-19 outbreak - have we got it wrong?

OBJECTIVES: Over time, papers or reports may come to be taken for granted as evidence for some phenomenon. Researchers cite them without critically re-examining findings in the light of subsequent work. This can give rise to misleading or erroneous results and conclusions. We explore whether this has occurred in the widely reported outbreak of SARS-CoV-2 at a rehearsal of the Skagit Valley Chorale in March 2020, where it was assumed, and subsequently asserted uncritically, that the outbreak was due to a single infected person. STUDY DESIGN: Review of original report and subsequent modelling and interpretations. METHODS: We reviewed and analysed original outbreak data in relation to published data on incubation period, subsequent modelling drawing on the data, and interpretations of transmission characteristics of this incident. RESULTS: We show it is vanishingly unlikely that this was a single point source outbreak as has been widely claimed and on which modelling has been based. CONCLUSION: An unexamined assumption has led to erroneous policy conclusions about the risks of singing, and indoor spaces more generally, and the benefits of increased levels of ventilation. Although never publicly identified, one individual bears the moral burden of knowing what health outcomes have been attributed to their actions. We call for these claims to be re-examined and for greater ethical responsibility in the assumption of a point source in outbreak investigations.

The Ongoing Process of HIV-Stigma (Re)Production.

HIV stigma negatively affects the social experiences of people living with HIV (PLWH) and remains a challenge to HIV prevention, treatment, and care. Research has overwhelmingly focused on individual cognitive measures of HIV stigma (e.g., internalized, anticipated, and experienced). However, little research explores the interactions and societal structures through which HIV stigma is produced. Data from qualitative interviews with 30 black gay and bisexual men living with HIV in the U.S. Deep South revealed an interconnected and interdependent set of processes that produce and reproduce HIV stigma. These included social interactions (silence, euphemism, and gossip), witnessed acts of marginalization, word-of-mouth transmission of HIV misinformation, and laws and policies carried out within the education and criminal justice systems. Efforts to reduce stigma that focus on individual beliefs and attitudes are critical to improving the well-being of PLWH. However, reducing HIV stigma requires intervening on the social interactions and structures through which HIV stigma is produced and reproduced.

What would it take to meaningfully attend to ethnicity and race in health research? Learning from a trial intervention development study.

The lack of ethnic diversity in health research participation is a multi-dimensional problem. Racism and intersectional disadvantage compel us to use racial and ethnic categories to explore health, but race theorists warn that these can be essentialising and pathologising. Yet, the alternative, the pursuit of colour-blindness, can render the impact of race and ethnicity on health invisible. This paper describes the attempt to recruit an ethnically diverse sample to inform the development of an intervention for stroke patients. The study revealed deep uncertainties and tensions, which we use to re-examine our own positionalities and perspectives. We focus on the experiences of researchers and participants to show how 'usual' research practices are unwittingly exclusionary and promote 'methodological whiteness' (The British Journal of Sociology, 2017, 68, S214). Calls for greater diversity in research are frequently made, yet health research remains tainted by the use of problematic epistemological starting points, rendering participation by minoritised people uneasy. Medical sociologists, especially those engaged in clinical trials, have a vital role to play in recalibrating health research to attend to ethnicity and race. This requires us to reflect on our practices, to recognise where we are complicit in replicating social inequalities and to actively engage with communities to produce more inclusive research.

'Doing' hypertension: Experiential knowledge and practice in the self-management of 'high blood' in the Philippines.

Patients' embodied experiences do not always correspond to the biomedical concepts of particular diseases. Drawing from year-long fieldwork in the Philippines that involved semi-structured interviews, focus group discussions and digital diaries, we examine how individuals 'do' hypertension through their embodied experiences and the knowledge and practice that emerge from them. Drawing inspiration from Annemarie Mol's work on the notion of 'multiplicity' of disease, our analysis was informed by a commitment to privileging patients' embodied experiences and the multiple ontologies of hypertension. We find that for patients diagnosed with hypertension in the Philippines, symptoms enact illness; patients rely on their own embodied knowledge to define their illness' nature (e.g., diagnosis), experience (e.g., frequency of symptoms and non-chronicity) and praxis (e.g., self-care practices). We show how this knowledge gained from having embodied experiences of living with the disease interacts in various ways with biomedical knowledge, other diagnostic labels and clinical practices, to shape how hypertension manifests and is managed by patients. Beyond interrogating the relationship between what counts as a 'disease' and what is considered a 'symptom', our findings underscore the need to pay attention instead to the mutually co-constitutive processes of embodied experiences and disease categories in co-producing patient knowledge.

Responsibility in Medical Sociology: A Second, Reflexive Look.

Personal responsibility has emerged as an important element in many countries' public health planning, and has attracted substantial debate in public health discourse. Contemporary medical sociology typically resists such "responsibilization" as victim-blaming, by privileged elites, that obscures important structural factors and inequities. This paper, based primarily on a broad review of how contemporary Anglophone medical sociology literatures treat responsibility and blame, points out advantages of taking responsibility seriously, particularly from the individual's perspective. These advantages include: empowerment; responsibility-as-coping-mechanism; moral dignity; and the pragmatic logic of doing for oneself, rather than passively awaiting societal reforms. We also offer possible reasons why sociologists and their subjects view these issues so differently, and suggest some areas for future research.

Money Moves the Mare: The Response of Community-Based Organizations to Health Care's Embrace of Social Determinants.

Policy Points Health policies that encourage health and social integration can induce community-based organizations (CBOs) to adopt new ways of working from health care organizations, including their language, staffing patterns, and metrics. These changes can be explained by CBOs' perceptions that health care organizations may provide new sources of revenue. While the welfare implications of these changes are not yet known, policymakers should consider balancing the benefits of professionalizing CBOs against the risks of medicalizing them. CONTEXT: Recent health policies incentivize health care providers to collaborate with community-based organizations (CBOs), such as food pantries and homeless shelters, to address patients' social determinants of health (SDOH). The perspectives of health care leaders on these policy changes have been studied, but the perspectives of CBO managers have not. METHODS: Our research question was: How are CBOs in Massachusetts perceiving and responding to new Medicaid policies that encourage collaboration between health care organizations and CBOs? We interviewed 46 people in leadership positions at CBOs in Massachusetts for approximately an hour each. We analyzed these data abductively, meaning that we iterated between inductively coding transcripts and consulting existing theories and frameworks. FINDINGS: We found evidence of a knowing-doing gap among CBOs. Even though CBOs value their distinctiveness and autonomy from health care, they have undertaken a series of organizational changes in response to the new Medicaid policy that make their organizations appear more like health care organizations. These changes include adopting new performance metrics, hiring clinical staff to the board and senior management positions, and using medical language to describe nonmedical work. Drawing on institutional theory, we suggest that the nonprofits undertake such changes in an effort to demonstrate legitimacy to health care organizations, who may be able to provide new sources of critically needed revenue. CONCLUSIONS: Massachusetts CBOs perceive health systems as potential sources of revenue, due in part to an ongoing Medicaid redesign that encourages the integration of health and social services. This perception is driving CBOs to appear more like health care organizations, but the impacts of these changes on welfare remain unknown.

Interprofessional and multiprofessional approaches in quality improvement education.

The imperative for all healthcare professionals to partake in quality improvement (QI) has resulted in the development of QI education programs with participants from different professional backgrounds. However, there is limited empirical and theoretical examination as to why, when and how interprofessional and multiprofessional education occurs in QI and the outcomes of these approaches. This paper reports on a qualitative collective case study of interprofessional and multiprofessional education in three longitudinal QI education programs. We conducted 58 interviews with learners, QI project coaches, program directors and institutional leads and 135 h of observations of in-class education sessions, and collected relevant documents such as course syllabi and handouts. We used an interpretive thematic analysis using a conventional and directed content analysis approach. In the directed content approach, we used sociology of professions theory with particular attention to professional socialization, hierarchies and boundaries in QI, to understand the ways in which individuals' professional backgrounds informed the planning and experiences of the QI education programs. Findings demonstrated that both interprofessional and multiprofessional education approaches were being used to achieve different education objectives. While each approach demonstrated positive learning and practice outcomes, tensions related to the different ways in which professional groups are engaging in QI, power dynamics between professional groups, and disconnects between curricula and practice existed. Further conceptual clarity is essential for a more informed discussion about interprofessional and multiprofessional education approaches in QI and explicit attention is needed to professional processes and tensions, to optimize the impact of education on practice.

'You're just a locum': professional identity and temporary workers in the medical profession.

Internationally, there has been substantial growth in temporary working, including in the medical profession where temporary doctors are known as locums. There is little research into the implications of temporary work in health care. In this paper, we draw upon theories concerning the sociology of the medical profession to examine the implications of locum working for the medical profession, healthcare organisations and patient safety. We focus particularly on the role of organisations in professional governance and the positioning of locums as peripheral to or outside the organisation, and the influence of intergroup relationships (in this case between permanent and locum doctors) on professional identity. Qualitative semi-structured interviews were conducted between 2015 and 2017 in England with 79 participants including locum doctors, locum agency staff, and representatives of healthcare organisations who use locums. An abductive approach to analysis combined inductive coding with deductive, theory-driven interpretation. Our findings suggest that locums were perceived to be inferior to permanently employed doctors in terms of quality, competency and safety and were often stigmatised, marginalised and excluded. The treatment of locums may have negative implications for collegiality, professional identity, group relations, team functioning and the way organisations deploy and treat locums may have important consequences for patient safety.

[Professional profiles and representations of staff members in Burundi health centers: Socio-professional groups with compartmentalizes knowledge]. / Profils et représentations professionnelles des agents en centre de santé au Burundi : des groupes socio-professionnels aux savoirs cloisonnés.

BACKGROUND: The professional identities, profiles and representations of Burundian health workers remain insufficiently explored. Our twofold objective is to identify the different socio-professional profiles of first-line caregivers and to explore their respective representations of health workers and work. METHODS: The first study describes the overall population of the 1047 staff members employed in 2014-2015 in 62 health centers. The second is a cross-sectional survey conducted in April 2014. Using IRAMUTEQ© software, we conducted textology analysis of the structure and contents of 911 respondents' representations via 3 free associations with regard to 6 questions on the "good worker" and the "what renders one capable of doing good work". RESULTS: At the normative level, among all categories of staff, a relational role is a foundation of professional identity, while technical or administrative functions remain marginal. At the positional level, responses differed according to initial qualification level but not as a function of their role with patients or their professional experience. Three socio-professional categories emerged. The most qualified category (one-quarter of the population) consists primarily of male caregivers, with a high turnover rate (4 years) associated with prospects for further training and career development. These persons present the most professionalized representations of the worker and work. The second quarter has an average level of qualification and turnover (10 years), and is mainly composed of female caregivers with limited professional perspectives. This group's representations are less technical and more patient-centered. Finally, the remaining half consists of relatively low-skilled staff members in charge of technical and logistical support, who are likely to spend their entire career in the same center (>20 years). Largely disregarded by the health care system and its funders, they have few opportunities for training or advancement and despite their long experience, maintain profane representations of workers and work. CONCLUSION: Our results shed light on the predicament of unskilled staff members whose expectations are rarely taken into consideration, even though they represent a significant proportion of the workforce, perform tasks essential to quality of care, and serve as bearers of the memory of their hospital center. These results also highlight the compartmentalization of practices and knowledge between categories of workers and underscore the failure of continuous training strategies targeting the unskilled.

Stumbling Into Adulthood: Learning From Depression While Growing Up.

Depression manifests in distinct ways across the life course. Recent research emphasizes how depression impedes development during emerging adulthood. However, our study-based on 40 interviews with emerging adults from multiple regions in the United States, analyzed following grounded theory-suggests a more complex narrative. Increasing experience with cycles of depression can also catalyze (a) mature perspectives and coping mechanisms that protect against depression's lowest lows; (b) deeper self-knowledge and direction, which in turn promoted a coherent personal identity; and (c) emergence of a life purpose, which fostered attainment of adult roles, skill development, greater life satisfaction, and enriched identity. Our synthesis reveals how depression during emerging adulthood can function at once as toxin, potential antidote, and nutritional supplement fostering healthy development. Our central finding that young adults adapt to rather than recover from depression can also enrich resilience theory, and inform both social discourse and clinical practice.

Who Gets the Benefit of the Doubt? Performance Evaluations, Medical Errors, and the Production of Gender Inequality in Emergency Medical Education.

Why do women continue to face barriers to success in professions, especially male-dominated ones, despite often outperforming men in similar subjects during schooling? With this study, we draw on role expectations theory to understand how inequality in assessment emerges as individuals transition from student to professional roles. To do this, we leverage the case of medical residency so that we can examine how changes in role expectations shape assessment while holding occupation and organization constant. By analyzing a dataset of 2,765 performance evaluations from a three-year emergency medicine training program, we empirically demonstrate that women and men are reviewed as equally capable at the beginning of residency, when the student role dominates; however, in year three, when the colleague role dominates, men are perceived as outperforming women. Furthermore, when we hold resident performance somewhat constant by comparing feedback to medical errors of similar severity, we find that in the third year of residency, but not the first, women receive more harsh criticism and less supportive feedback than men. Ultimately, this study suggests that role expectations, and the implicit biases they can trigger, matter significantly to the production of gender inequality, even when holding organization, occupation, and resident performance constant.

The dual contingencies of ethnoraciality: Status-context disparities in health information sources among sexual minorities.

Researchers often explore health (care) beliefs as a function of individual characteristics; yet, few consider the role of context in shaping both beliefs and the behaviors that are informed by them. As a sociopolitical construct, ethnoraciality provides a concerning source of bias in studies of health (care) beliefs because it inhabits both individual and contextual forms. This study examines whether the ethnoracial context of the residential area where sexual minorities live is associated with a particular health (care) belief - sources of trustworthy health information - and considers how ethnoracial group membership status differentiates these ecological associations drawing on mediation and moderation models. Using data from the 2010 Social Justice Sexuality Project, our analysis shows that sexual minorities who live with high concentrations of Latinos and Whites are less likely to rely exclusively on medical professionals for trustworthy health information than those who live with high concentrations of Blacks. Moreover, exclusive reliance on medical professionals for health information among Black and Latino sexual minorities is stronger in co-ethnic communities (predominately Black and Latino areas, respectively). The analysis also documents status and contextual differentials and status-context contingencies of reliance on the Internet, social networks, and multiple agents ("triangulation") as sources of health information. Findings suggest that place-based co-ethnic networks may facilitate disease prevention among Black and Latino sexual minorities by improving the quality of their relationships with sick role gatekeepers and breaking down the silos of the medical complex. The study concludes by considering the value of a place-based approach to alleviating health disparities among sexual minorities vis-à-vis the health care system.

Trends in interest of COVID-19 on Polish Internet.

INTRODUCTION: This study aims to investigate the social interest in SARS-CoV-2 and COVID-19 in the Internet media during the epidemic in Poland and serves as a complement to longitudinal surveys monitoring public perception in real time. METHODS: We quantitatively analyzed "coronavirus" digital footprints on the Internet, in particular, on Google, Twitter, YouTube, Wikipedia and electronic media represented by EventRegistry, from 15.01 to 07.04.2020 (before and after official introduction of COVID-19 to Poland on 04.03.2020). We present results on trend analysis supported by statistical techniques. RESULTS: We identified six major temporal clusters of the interest on the topic COVID-19: 1) Chinese, 2) Italian, 3) Waiting, 4) Mitigations, 5) Physical distancing and Lockdown, 6) Anti-crisis shield. There was an exponential increase of the interest when the Polish government "declared a war against disease" around 11/12.03.2020 with a massive response activity. Later on, there was a decay in the interest with additional phases related to physical distancing and an anti-crisis legislation act associated with pronounced local peaks. We have found that declarations of response strategies by the Polish prime minister or the minister of health gathered the highest attention of Internet users. So already enacted or in force events do not affect the interest to such an extent. We have observed very weak or even negative correlations between a colloquial search term "antiviral mask" in Google, encyclopaedic definition in Wikipedia "SARS-CoV-2" as well as official COVID-19 incidence series, implying different mechanisms governing the search for knowledge, panic related behaviour and actual burden of COVID-19. CONCLUSIONS: Traditional and social media do not only reflect reality, but also create it. Interest in COVID-19 (measured by topic intensity on the Internet) is unrelated to the officially notified viral pressure (measured by incidence) and probably physical risk of acquiring infection in Poland. As traditional media are ahead of social media in time, we advise to choose traditional news media for a quick dissemination of information, however for a greater impact, social media should be used. Otherwise public information campaigns might have less impact on society than expected.

Managing Stigma: Young People, Asthma, and the Politics of Chronic Illness.

In this article, we explore the relationship between asthma and stigma, drawing on 31 interviews with young people (aged 5-17) in Ireland. Participants with mild to moderate asthma were recruited from Traveller and middle-class settled communities. Themes derived from an abductive approach to data analysis and a critical appreciation of Goffmanesque sociology include asthma as a discreditable stigma, negative social reactions (real, imagined, and anticipated), and stigma management. Going beyond a personal tragedy model, we reflect upon macro-social structures (e.g., ethnicity, class, gender) which underlie stigma and the management of a potentially spoiled identity. This raises issues about the politics of chronic illness, embodying health identities and efforts to tackle stigma in neoliberal times.

Titrating the Rig: How Paramedics Work in and on Their Ambulance.

In this article, I take readers inside of an ambulance and explore how paramedics work in and on their "apparatus unit" to make it a workable fit. This taken-for-granted work is important because much is at stake in the back of the ambulance, particularly in relation to quality of care and safety. I draw on data from an institutional ethnography into the socially organized work and work settings of paramedics, which included more than 200 hr of observations and more than 100 interviews with paramedics. The findings shed light on the situated work processes of paramedics as they orient and respond to their "apparatus unit" and enact quality and safety in practice. This article adds to the sociological literature on work and occupations as well as safety and quality in health care of an increasingly important group of health care and emergency services professional.

Medicalising short children with growth hormone? Ethical considerations of the underlying sociocultural aspects.

In 2003, the Food and Drug Administration approved the use of growth hormone treatment for idiopathic short stature children, i.e. children shorter than average due to an unknown medical cause. Given the absence of any pathological conditions, this decision has been contested as a case of medicalisation. The aim of this paper is to broaden the debate over the reasons for and against the treatment, to include considerations of the sociocultural phenomenon of the medicalisation of short stature, by means of a critical understanding of the concept of medicalisation. After defining my understanding of medicalisation and describing both the treatment and the condition of idiopathic short stature, I will problematise two fundamental issues: the medical/non-medical distinction and the debate about the goals of medicine. I will analyse them, combining perspectives of bioethics, medical sociology, philosophy of medicine and medical literature, and I will suggest that there are different levels of normativity of medicalisation. Ultimately, this study shows that: (1) the definition of idiopathic short stature, focusing only on actual height measurement, does not provide enough information to assess the need for treatment or not; (2) the analysis of the goals of medicine should be broadened to include justifications for the treatment; (3) the use of growth hormone for idiopathic short stature involves strong interests from different stakeholders. While the treatment might be beneficial for some children, it is necessary to be vigilant about possible misconduct at different levels of medicalisation.

Technological innovations and the rise of social inequalities in health.

Social inequalities in health have been categorised as a human-rights issue that requires action. Unfortunately, these inequalities are on the rise in many countries, including welfare states. Various theories have been offered to explain the persistence (and rise) of these inequalities over time, including the social determinants of health and fundamental cause theory. Interestingly, the rise of modern social inequalities in health has come at a time of great technological innovation. This article addresses whether these technological innovations are significantly influencing the persistence of modern social inequalities in health. A theoretical argument is offered for this potential connection and is discussed alongside the typical social determinants of health perspective and the increasingly popular fundamental cause perspective. This is followed by a proposed research agenda for further investigation of the potential role that technological innovations may play in influencing social inequalities in health.

Rethinking the relationship between socio-economic status and health: Making the case for sociological theory in health inequality research.

AIM: The aim of this study is to analyse previous explanations of social inequality in health and argue for a closer integration of sociological theory into future empirical research. METHODS: We examine cultural-behavioural, materialist, psychosocial and life-course approaches, in addition to fundamental cause theory. Giddens' structuration theory and a neo-materialist approach, inspired by Bruno Latour, Gilles Deleuze and Felix Guattari, are proposed as ways of rethinking the causal relationship between socio-economic status and health. CONCLUSIONS: Much of the empirical research on health inequalities has tended to rely on explanations with a static and unidirectional view of the association between socio-economic status and health, assuming a unidirectional causal relationship between largely static categories. We argue for the use of sociological theory to develop more dynamic models that enhance the understanding of the complex pathways and mechanisms linking social structures to health.