Sociology of health & illness最新文献

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.

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.

During the twentieth century, many countries underwent processes of 'de-institutionalisation'-closing 'asylums' for people with mental health problems, learning disabilities and dementia. Despite this, the UK has witnessed a subsequent process of 're-institutionalisation' with the creation of new public/private sector facilities providing 'secure' care to large numbers of people, who can be residents for many years with no sense of when they may leave. In 2023, 2035 people with learning disabilities and/or autistic people were receiving inpatient hospital care in England, with 54% in hospital for over two years. Drawing on the lived experience of people in hospital/families, and the practice knowledge of front-line staff, this paper critically analyses why this process of re-institutionalisation may be taking place. Our argument is that institutional forms of care have gradually been re-introduced-despite the influence of neoliberal health policies that have previously aimed at deinstitutionalisation and self-care-because some people are viewed as 'too difficult' to govern through the prevailing dispositive of self-care, and therefore become the subjects of more disciplinary forms of power. Once in hospital, the primary routes to 'escape' require performative acts of 'good conduct' that give confidence to professionals of a person's capacity for self-government.

Controlled organ donation after circulatory death (DCD) was re-introduced in the UK in 2008, in efforts to increase rates of organs for transplant. Following reintroduction, there were debates about the ethics of DCD, including whether potential DCD donors receive end-of-life care which is in their best interests. Since this time, DCD has become a routine donor pathway in the NHS. In this article, we present findings from an ethnographic study examining the everyday practices of DCD in two English Trusts. Drawing on the concept of death brokering and Bea's (2020) call to consider organ donation as embedded and routine practice within health care, we look at how DCD is integrated into end-of-life care in intensive care units. We show how DCD is made routine at the end-of-life via the practices of health professionals who create an active separation between discussions about death and donation; reproduce usual ways of doing things in end-of-life care; and respect the distinction between patient/donor, dying and death. In doing so, we argue these function to preserve the patienthood of the potential donor, ensuring DCD operates as an integrated part, and culturally accepted form of, good end-of-life care for potential donors, their relatives, and health professionals alike.

Recently there has been growing recognition of the productive and protective features of our microbial kin and the crucial role of 'commensal' microbes in supporting and sustaining health. Current microbiological and pharmacological literature is increasingly highlighting the role of maternal gut microbiomes in the long-term health of both mothers and children. Drawing on the information and advice directed towards Australian parents from conception through the first years of a child's life, we consider its messaging about the need to secure for the foetus/future-child an enduring, optimal state of health by managing the maternal microbiome. We argue that this post-Pasteurian trend gives rise to relations of care that are, at once, newly collective and more-than-human-but also disciplinary in ways that position the maternal microbiome as a new site of scrutiny that disproportionately responsibilises and burdens mothers. We notice how microbiome research is used both to reframe motherhood as a form of micro(bial)-management and to maintain motherhood as a medicalised process. The feminist and more-than-human potential that this research can provide is missing in the way these resources are presented to parents.

In the UK, up to 700 people with HIV give birth annually; the majority are Black African migrant cisgender women. Infant-feeding decisions for parents with HIV are complex, requiring parents to weigh-up the small risk of HIV transmission via breastmilk and UK guidelines recommending formula milk, against strong personal and societal expectations to breastfeed. We explored this situation in a qualitative study. In this paper, we discuss our experiences of co-producing our research on infant-feeding experiences and practices among women with HIV. In particular, we focus on how our methodology, working practices and team structure enabled us to hear and describe the 'silences' and 'screaming silences' faced by our socially marginalised study participants. For the participants, intense multidimensional anxieties regarding infant-feeding had to be managed within a wider context and with people who were largely unaware of the potentially devastating impact that decision had on their reality. Our interdisciplinary study team and advisory panel comprised women with HIV, clinicians, policymakers and academics; the majority were racially minoritised women. Through regular team meetings, respect for the varied perspectives of all contributors and diverse dissemination routes, we sustained relational ethics with a broad range of stakeholders and impacted national policy.

This article focuses on an empirical setting that upends the clinician-patient dyadic norm: group medical visits (GMVs), in which multiple patients gather in the same space for medical care, health education and peer support. Our grounded theory analysis draws on participant observation and interviews (N = 53) with patients and staff of GMVs at four safety-net healthcare organisations in the United States. We delineate (1) how group medical visits provide health-focused social networks that facilitate the mobilisation of social capital, (2) how the organisationally embedded relationships that comprise group visits are made possible through extended time that is part of the GMV field and (3) how clinicians have opportunities rarely found in other settings to learn from patients, using knowledge accrued from GMV networks to advance their own skills, thereby converting social capital into provider cultural health capital. GMVs provide a rich empirical site for understanding the ways in which organisational arrangements can shape opportunities for patients and clinicians to cultivate and mobilise social capital and cultural health capital, and in doing so, materially shift experiences of receiving and providing healthcare.

Workplace incivility is a pervasive complex problem within health care. Incivility manifests as subtle disrespectful behaviours, which seem inconsequential. However, evidence demonstrates that incivility can be harmful to targets and witnesses through negative emotions, poorer mental health, reduced job satisfaction, diminished performance and compromised patient care. It is unclear to what extent existing research critically explores how ethnicity, culture and racism influence how hospital staff experience incivility. This global scoping review systematically analysed existing research exploring the specific ways incivility manifests and impacts racially minoritised hospital workers. Of 2636 academic and 101 grey literature articles, 32 were included. Incivility experiences were categorised into four themes: (1) Cultural control, (2) Rejection of work contributions, (3) Disempowerment at work and (4) Managerial indifference. The included articles highlighted detrimental consequences, such as negative emotions, silencing, withdrawal and reduced support-seeking behaviours. Few studies presented evidence regarding the negative impacts of incivility on patient care. Racialisation and racial dynamics are a significant factor for hospital-based incivility. Currently we do not know the extent to which racialised incivility is associated directly or, perhaps either via burnout or disengagement, indirectly with poorer care. This knowledge can inform the creation of comprehensive, evidence-based interventions to address this important issue.

Creative well-being is an increasing field of interest to which biomedical and social sciences have made uneven contributions. The instrumental value of culture and its subsequential public investment is grounded in the interplay of social, cultural and economic capital to attain and preserve wellbeing and health and foster social mobility. The current evidence addresses the effectiveness of arts interventions in improving illnesses. Little attention has been paid to the social value of creative wellbeing for the general population. This paper is a rapid review and evidence synthesis that aims to answer the question, 'What is the social value of place-based arts and culture interventions at individual (wellbeing) and community (social inequalities) levels in the UK and Europe?'. After a systematic search of five databases, search engines, and a call for evidence in August 2022, 14 out of 974 sources met the inclusion criteria. Studies were organised into three themes (Community, Events, Museums), and outcomes were analysed considering the indicators and dimensions of wellbeing (Office for National Statistics). The review evidenced that creative wellbeing leads to improvements in wellbeing outcomes and can contribute to alleviating social determinants of health. However, considering their impact on the underlying causes of structural social inequalities requires caution.

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.