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Using cross-sectional data from a representative sample of the French population (the 2008 Disability Health survey), this paper examines whether the SF-6D, a widely used preference-based measure of health-related quality of life in economic evaluations, fully captures the variation in subjective well-being (SWB) due to chronic illnesses. We conduct a mediation analysis to disentangle the direct and indirect, through the SF-6D, effects of various chronic conditions on SWB (happiness). Our results show that the SF-6D reflects changes in happiness due to most illnesses except mental illness. Changes in SWB mediated by the SF-6D account for 74% of the total effect. The variation unexplained by the SF-6D is significant and increases substantially in the presence of multimorbidity when a chronic illness is combined with anxiety or depression. Overall, our results suggest that the SF-6D incompletely captures the subjective experience of chronically ill patients, especially those with comorbid conditions. • 74% of the effect of chronic illness on happiness is captured by the SF-6D. • The SF-6D does not fully capture the effect of mental illness on happiness. • The effect not captured by the SF-6D increases significantly with multimorbidity. [ABSTRACT FROM AUTHOR]

Abstract Small area health data are not always available on a consistent and robust routine basis across nations, necessitating the employment of small area estimation methods to generate local-scale data or the use of proxy measures. Geodemographic indicators are widely marketed as a potential proxy for many health indicators. This paper tests the extent to which the inclusion of geodemographic indicators in small area estimation methodology can enhance small area estimates of limiting long-term illness (LLTI). The paper contributes to international debates on small area estimation methodologies in health research and the relevance of geodemographic indicators to the identification of health care needs. We employ a multilevel methodology to estimate small area LLTI prevalence in England, Scotland and Wales. The estimates were created with a standard geographically-based model and with a cross-classified model of individuals nested separately in both spatial groupings and non-spatial geodemographic clusters. LLTI prevalence was estimated as a function of age, sex and deprivation. Estimates from the cross-classified model additionally incorporated residuals relating to the geodemographic classification. Both sets of estimates were compared against direct estimates from the 2011 Census. Geodemographic clusters remain relevant to understanding LLTI even after controlling for age, sex and deprivation. Incorporating a geodemographic indicator significantly improves concordance between the small area estimates and the Census. Small area estimates are however consistently below the equivalent Census measures, with the LLTI prevalence in urban areas characterised as 'blue collar' and 'struggling families' being markedly lower. We conclude that the inclusion of a geodemographic indicator in small area estimation can improve estimate quality and enhance understanding of health inequalities. We recommend the inclusion of geodemographic indicators in public releases of survey data to facilitate better small area estimation but caution against assumptions that geodemographic indicators can, on their own, provide a proxy measure of health status. Highlights • A novel cross-classified extension to small area estimation methodology. • Small area estimation of health indicators can be enhanced by geodemographic data. • Geodemographics and deprivation independently impact small area health estimates. • Deprived urban communities have much worse health than expected. [ABSTRACT FROM AUTHOR]

Small area health data are not always available on a consistent and robust routine basis across nations, necessitating the employment of small area estimation methods to generate local-scale data or the use of proxy measures. Geodemographic indicators are widely marketed as a potential proxy for many health indicators. This paper tests the extent to which the inclusion of geodemographic indicators in small area estimation methodology can enhance small area estimates of limiting long-term illness (LLTI). The paper contributes to international debates on small area estimation methodologies in health research and the relevance of geodemographic indicators to the identification of health care needs. We employ a multilevel methodology to estimate small area LLTI prevalence in England, Scotland and Wales. The estimates were created with a standard geographically-based model and with a cross-classified model of individuals nested separately in both spatial groupings and non-spatial geodemographic clusters. LLTI prevalence was estimated as a function of age, sex and deprivation. Estimates from the cross-classified model additionally incorporated residuals relating to the geodemographic classification. Both sets of estimates were compared against direct estimates from the 2011 Census. Geodemographic clusters remain relevant to understanding LLTI even after controlling for age, sex and deprivation. Incorporating a geodemographic indicator significantly improves concordance between the small area estimates and the Census. Small area estimates are however consistently below the equivalent Census measures, with the LLTI prevalence in urban areas characterised as 'blue collar' and 'struggling families' being markedly lower. We conclude that the inclusion of a geodemographic indicator in small area estimation can improve estimate quality and enhance understanding of health inequalities. We recommend the inclusion of geodemographic indicators in public releases of survey data to facilitate better small area estimation but caution against assumptions that geodemographic indicators can, on their own, provide a proxy measure of health status. • A novel cross-classified extension to small area estimation methodology. • Small area estimation of health indicators can be enhanced by geodemographic data. • Geodemographics and deprivation independently impact small area health estimates. • Deprived urban communities have much worse health than expected. [ABSTRACT FROM AUTHOR]

Abstract The concept of biographical disruption has now enjoyed nearly 40 years of use in medical sociology. This paper argues that taking an embodied approach to biographical disruption helps to explain the concept's enduring efficacy. Drawing on the work of Maurice Merleau-Ponty and contemporary theories of embodiment inspired by his phenomenology, this paper advances that biographical disruption involves, in the first instance, a disruption to the ability to enact an embodied orientation towards the world. Biographical disruption does not, from this perspective, result from illness as such, but from the ways that illness impinges on one's physical ability to engage with daily life. This paper examines the experiences of solid organ transplant recipients for the purpose of shedding light on the conditions under which biographical disruption arises in experience. The analysis includes interviews with 36 post-operative solid organ transplant recipients (heart, liver, lung, and kidney) living in British Columbia or Ontario, Canada. These participants exhibit a wide range of illness experiences, some of which manifest as biographical disruption and others that do not. Tracing the contours of these experiences, this paper argues that the efficacy of biographical disruption for describing the illness experience depends not only on the illness experience but also, fundamentally, on the content of embodiment prior to the onset of that experience. Highlights • The embodiment perspective improves the efficacy of biographical disruption. • The embodied context of an experience structures the illness experience. • Organ transplant recipients present variable experiences of biographical disruption. [ABSTRACT FROM AUTHOR]

Instead of diminishing with the spectacular advancement of medical expertise in the country , unqualified biomedical practice in India has been strengthened by the growth of the pharmaceutical production in the twenty first century. In public health discourse, the view that the informal health practitioners have to be punished and abolished has been countered by the recommendation that they could be trained and incorporated in primary health care where public health amenities are inadequate. The quality of care provided by the informal health care practitioners has also been subject to clinical assessment based on standardized patient vignettes. Based on a sociological approach, this paper examines the time line of chronically ill patients under lived conditions to arrive at an understanding of the role of informal health practitioners in long term treatment and highlights the setbacks. This paper draws on 253 household surveys from two villages in Madhya Pradesh, in depth interviews with four unqualified practitioners in the area, twenty five unstructured interviews of chronic patients, twenty five structured interviews on the cases of untimely death and FGDs with health workers in 2021. Informal health care practitioners offer consultation cum dispensing of medicines and are the primary source of biomedical care in the remote study area without any public transport. But they are 'for profit' economic actors who are ill-equipped to handle chronic diseases. What sets them aside from the qualified private doctors in the town is their social obligation to balance their profit motive with the ethics of proximity and neighborly ties with the villagers amidst whom they reside. These features of the market and community place the informal health care practitioners at the cusp of economy and society and defy simple binaries that they are either crooks or assets. • Unqualified health practitioners provide medical care in India where none is available. • Assessing their practices, clientele and exact role is crucial to health care policy. • One point standardized patient vignettes are used to assess their quality of care. • Their treatment of chronically and severely ill patients over time also has to be examined. • They are 'for profit' economic actors, but embedded in the community. [ABSTRACT FROM AUTHOR]

The last two decades have seen growing unease regarding the negative health consequences of increasing levels of physical inactivity, both in the UK and further afield. Public health initiatives and interventions aimed at increasing levels of physical activity have, therefore, become somewhat commonplace. Within the current context of demographic change, with growing numbers of older adults and evidence that inactivity increases with age, these initiatives hold particular relevance to mid and later-life adults. Yet despite their prevalence, the policy gains from such promotional efforts have typically been modest at best, demonstrating the limits to decontextualized health messages that encourage people to 'sit less', 'move more' or 'move faster'. In this paper, we draw on the concept of rhythm, to provide an original contribution in response to recent calls to rethink existing approaches to physical activity in mid-life and beyond. We draw from three qualitative data sets from separate studies exploring health, wellbeing and ageing (two in the context of chronic health conditions and sensory impairments). Inspired by facet methodology, we advance knowledge by providing 'flashes of insight' into the subtle patterns and tempos that frame physical activity in mid and later life. In doing so, we offer alternative insight into how people avail themselves to, and experience motion and stillness during these life stages. That alternative, as we also note, has an important role to play in the development of appropriate, relatable health messages regarding movement that recognises 'expertise by experience'. • Instructions to simply 'move more' can overlook the impact of context on PA. • Experiences of physical activity are shaped by numerous rhythmic flows. • Rhythm provides new ways of understanding PA in mid-later life. [ABSTRACT FROM AUTHOR]

Abstract Contemporary publics actively engage with diverse forms of media when seeking health-related information. The hugely popular digital media platform YouTube has become one means by which people share their experiences of healthcare. In this paper, we examine amateur YouTube videos featuring people receiving Deep Brain Stimulation (DBS) for the treatment of Parkinson's disease. DBS has become a widely implemented treatment, and it is surrounded by high expectations that can create difficulty for clinicians, patients and their families. We examine how DBS, Parkinson's disease, and DBS recipients themselves, are delineated within these YouTube videos. The videos, we demonstrate, contain common compositional and stylistic elements that collectively represent DBS as a technological fix, and which accentuate the autonomy of the DBS recipient. The relational, interpersonal dimensions of chronic illness, and the complex impact of DBS on family dynamics, are elided. We therefore shed light on the means by which high expectations regarding DBS are sustained and circulated, and more generally, we illustrate how potentially powerful representations of medical technologies can emerge from the intersection of social media platforms, afflicted bodies and patient narratives. Highlights • YouTube has become a forum for sharing experiences of deep brain stimulation (DBS). • Amateur YouTube videos configure DBS as a technological fix. • Videos often elide the complexity of chronic illness and its treatment. • Videos thus sustain expectations that technologies enhance patient independence. • Powerful portrayals emerge from intersections of social media, bodies & narratives. [ABSTRACT FROM AUTHOR]

Abstract Our paper explores how legal status stratification shapes the health and health care of low-income patients with chronic illnesses in the U.S. healthcare safety net. Drawing on data from over two years of ethnographic fieldwork at urban safety-net clinics, we examine efforts by Complex Care Management (CCM) teams to stabilize patients with uncontrolled chronic illnesses through primary care-integrated support. We show that stratified citizenship and geographic variability correspond to different possibilities for health care. We suggest an approach to immigration as a structural determinant of health that accounts for the complex, stratified, and changing nature of citizenship status. We also highlight how geographical differences and interactions among local, state, and federal policies support the notion that citizenship is stratified across multiple tiers with distinctive possibilities and constraints for health. While county-based health plans at each of the study sites include residents with varying legal status, lack of formal legal status remains a substantial obstacle to care. Many immigrants are unable to take full advantage of primary and specialty care, resulting in unnecessary morbidity and mortality. In some cases, patients have returned to their country of origin to die. While CCM teams provide an impressive level of support to assist immigrant patients in navigating healthcare and immigration bureaucracies, legal and geographic stratification limit their ability to address broader aspects of these patients' social context. Highlights • Immigration status shapes the health of chronically ill U.S. safety net patients. • Local, state, and federal policies differentially stratify legal status and health. • Ethnography illustrates health impacts of stratified legal status. • Complex care management patients lacking legal status face obstacles to care. • Legal and geographic stratification impede immigrant CCM patients' health. [ABSTRACT FROM AUTHOR]

Medical students with chronic health conditions are an underrepresented and often overlooked population in medical education. Previous research describes the dual roles they hold as both healthcare recipients and providers and details challenges they face related to accommodations and accessibility. However, less is known about how having a chronic health condition shapes the day-to-day aspects of medical education. To address this gap in knowledge, I conducted semi-structured interviews with eighteen medical students with chronic conditions and examined data using reflexive thematic analysis. Findings revealed the competing demands students face between medical school expectations and the need to manage their health. They work to reconcile these demands using tools like accommodations and strategic communication and by reconstructing narratives to re-assess self-imposed expectations. These participants understand having a chronic health condition as just one piece of their larger sense of self. Participants approach this understanding in individualized and nuanced ways, yet all share a cohesive view that their experiences having chronic health conditions inform their medical practice for the better through the development of genuine empathy for patients. This paper concludes with recommendations drawn from participant interviews of how medical schools can better support students with chronic health conditions. • Chronic condition management and medical training compete for time and energy. • Demands are reconciled at structural, interpersonal, and intrapersonal levels. • Having a chronic condition influences but does not define medical training. • First-hand healthcare experiences build genuine empathy and improve patient care. [ABSTRACT FROM AUTHOR]

This paper uses longitudinal survey data linked to administrative registers to examine socioeconomic gradients in health, particularly whether the effects of genetic endowments interact with the socioeconomic resources of the parental household. We find that genetic risk scores contribute to adult health measured by biomarkers. This result is consistent with the findings from genome-wide association studies. Socioeconomic gradients in health differ based on biomarker and resource measures. Family education is negatively related to obesity and the waist-hip ratio, and family income is negatively related to low-density lipoprotein cholesterol and triglyceride levels. Parental resources do not modify the effects of genetic endowment on adult health. However, there is evidence for gene-family income interactions for triglyceride levels, particularly among women. [ABSTRACT FROM AUTHOR]

Diabetes is a major cause of morbidity, disability, mortality and health care resource use. The increasing prevalence of diabetes may therefore have dramatic future consequences for western societies. Diabetes entails a significant self-management component and it has previously been estimated that people with diabetes provide about 95% of their own care. Despite increased focus, self-management skills including basic knowledge acquisition, problem solving and setting realistic goals are often not mastered. The main contribution of this paper is to provide evidence that the heterogeneity in self-management and health outcomes amongst diabetes patients is partly attributable to individual differences in time-inconsistent preferences in terms of present biased behaviour. Using a unique data set consisting of survey data from 2014 merged with registry data on a sample of 79 chronically ill patients, we present empirical evidence that present biased individuals are more prone to onset of diabetes at an early age, and have a poorer prognosis after diagnosis. Furthermore, we conclude that present biasedness has a casual effect on the onset and management of diabetes. [ABSTRACT FROM AUTHOR]

There is growing concern among US-based clinicians, patients, policy makers, and in the media about the personal and community health risks associated with opioids. Perceptions about the efficacy and appropriateness of opioids for the management of chronic non-cancer pain (CNCP) have dramatically transformed in recent decades. Yet, there is very little social scientific research identifying the factors that have informed this transformation from the perspectives of prescribing clinicians. As part of an on-going ethnographic study of CNCP management among clinicians and their patients with co-occurring substance use, we interviewed 23 primary care clinicians who practice in safety-net clinical settings. In this paper, we describe the clinical and social influences informing three historic periods: (1) the escalation of opioid prescriptions for CNCP; (2) an interim period in which the efficacy of and risks associated with opioids were re-assessed; and (3) the current period of “opioid pharmacovigilance,” characterized by the increased surveillance of opioid prescriptions. Clinicians reported that interpretations of the evidence-base in favor of and opposing opioid prescribing for CNCP evolved within a larger clinical-social context. Historically, pharmaceutical marketing efforts and clinicians' concerns about racialized healthcare disparities in pain treatment influenced opioid prescription decision-making. Clinicians emphasized how patients' medical complexity (e.g. multiple chronic health conditions) and structural vulnerability (e.g. poverty, community violence) impacted access to opioids within resource-limited healthcare settings. This clinical-social history of opioid prescribing practices helps to elucidate the ongoing challenges of CNCP treatment in the US healthcare safety net and lends needed specificity to the broader, nationwide conversation about opioids. [ABSTRACT FROM AUTHOR]

This paper explores the multiple ways experiences of pregnancy and early motherhood come to ‘rework’ the biographies of women living with epilepsy. Pregnancy is explored as a temporarily concurrent status alongside the long-term condition of epilepsy. Narrative interviews were conducted with 32 women from across the UK. Analysis of these narratives suggests that biographical disruption and continuity are both useful in the conceptualisation of women's diverse experiences of pregnancy and epilepsy. Such findings challenge the notion that the presence of a condition over a long period of time leads to the normalisation of illness. Participants' narratives demonstrate that, for some, pregnancy and early motherhood may be disruptive and can raise concerns regarding an ever present condition that may previously have been taken for granted. Findings also indicate the need for a greater consideration of gender and care responsibilities, as well explorations of concomitant conditions, in the theorising of biographies and chronic illness. [ABSTRACT FROM AUTHOR]

It has been suggested recently that measures of Subjective Well-Being (SWB) instead of preferences could be employed to determine relative weights for the dimensions of health-related quality of life (HRQol) with the aim of developing health utility indexes for economic evaluation purposes. In this context, this paper addresses the possibility of reprioritization response shift in SWB. It examines whether the association between dimensions of HRQol and SWB changes over time in chronically ill patients. 215 women newly diagnosed for breast cancer in a French hospital between 2010 and 2012 completed the Satisfaction with Life Scale (SWLS) and the EORTC QLQ-C30 HRQol questionnaires over a two-year period. We estimated hierarchical random coefficients models for the repeated SWLS measures while allowing for time-varying parameters for the scales of the QLQ-C30 to test for reprioritization. Our findings suggest that women adapt to breast cancer by giving greater weight over time to the social dimension of HRQol. This possibility of reprioritization response shift should be considered in researches trying to develop SWB-based health utility values to inform the allocation of resources in health care. [ABSTRACT FROM AUTHOR]

Here we propose the term 'biographical dialectics' as a sister term to 'biographical disruption' to capture the ongoing problem solving that characterises the lives of many people living with life limiting chronic illnesses. The paper is based on the experiences of 35 adults with end-stage kidney disease (ESKD) in receipt of haemodialysis. Photovoice and semi-structured interviews showed that ESKD and the use of haemodialysis was widely agreed to be biographically disruptive. In talking about and showing disruption through photographs the participants' ongoing problem solving was universal across their diverse experiences. 'Biographical disruption' and Hegalian dialectical logic, are drawn on to make sense of these actions and to further understand the personal and disruptive experience of chronic illness. Based on this, 'biographical dialectics' captures the work that is required to account for and manage the enduring and biographical impact of chronic illness that follows the initial disruption of diagnosis and continues as life progresses. • Chronic illness can require ongoing problem solving. • The need for regular treatment (such as haemodialysis) can exacerbate disruption. • Biographical dialectics makes sense of ongoing problem solving behaviour. • Biographical dialectics draws on Hegel's dialectical logic. • Biographical dialectics can be used alongside biographical disruption. [ABSTRACT FROM AUTHOR]

Abstract: The aim of this paper is to examine educational inequalities in the risk of non-employment among people with illnesses and how they vary between European countries with different welfare state characteristics. In doing so, the paper adds to the growing literature on welfare states and social inequalities in health by studying the often overlooked ‘sickness’-dimension of health, namely employment behaviour among people with illnesses. We use European Union Statistics on Income and Living Conditions (EU-SILC) data from 2005 covering 26 European countries linked to country characteristics derived from Eurostat and OECD that include spending on active labour market policies, benefit generosity, income inequality, and employment protection. Using multilevel techniques we find that comprehensive welfare states have lower absolute and relative social inequalities in sickness, as well as more favourable general rates of non-employment. Hence, regarding sickness, welfare resources appear to trump welfare disincentives. [Copyright &y& Elsevier]

Abstract: This paper draws on interviews with members of the United Kingdom National Phobics Society to explore the implications of the contested nature of specific phobias for their experience and perception. In common with other chronic and contested conditions such as Chronic Fatigue Syndrome, phobias are stigmatised and subjected to widespread judgmental attitudes in both medical and lay populations. In contrast, however, phobic experience is rarely characterised by difficulty in describing symptoms and obtaining a diagnosis: core fearful reaction to and avoidance of particular objects is usually obvious and uncontested. The crucial difference is that phobias are constituted by emotions and behaviours considered irrational and inconsequential, and it is their (perceived absence of) significance that raises questions and eyebrows. In other words, what does it matter and who cares if you happen to be scared of snakes? Using phobics’ own words as far as possible, the paper explores the processes through which phobic emotions are constructed as contested, and examines phobic means of managing experience and perception of these emotions. It reveals that many respondents are resourceful and resistant, continually renegotiating their positioning as irrational, incapable and emotionally weak. [Copyright &y& Elsevier]

The embodiment of health identities is a growing area of interest. Questions posed in this literature include: how important is the body in our understandings/experiences of health, how are everyday definitions of health and self embodied despite chronic illness, and how do social relations influence these interpretations? Mindful of such questions, this paper draws on a qualitative study of mild to moderate asthma among young people in Ireland. In-depth interviews were undertaken with 31 respondents aged between 5 and 17, including boys ( n = 15) and girls ( n = 16) from different class and ethnic backgrounds. Core themes included: the importance of play, physical activity and sport; diet/nutrition; and physical appearance. Asthma sometimes presented challenges in relation to specific domains, notably strenuous physical activity, though in many other respects its potential impact was discursively minimised. Attentive to various modalities of the lived body, we illustrate how health identities are negotiated among young people diagnosed with a chronic illness. Connections are also made with the sociology of childhood and (ill) health, which views young people as active agents. [ABSTRACT FROM AUTHOR]

Drawing on interviews conducted in 2019–2020, across twenty villages in India, this paper unpacks how people with chronic illness navigate complex care-seeking terrain. We show how the act of seeking care involves navigating through personal, family, social, economic, cultural, and most importantly, difficult health systems spaces—and entails making difficult social, moral, and financial choices. We show how the absence of reliable and accessible points of first contact for primary care results in people running from pillar to post, taking wrong turns, and becoming disappointed, frustrated, and, sometimes, impoverished. We reveal the complex individual and social dynamics of hope and misplaced and misguided expectations, as well as social obligations and their performance that animate the act of navigating care in rural India. We shine light on how a health system with weak primary care and poor regulation amplifies the medical, social, and financial consequences of an otherwise manageable chronic illness, and how these consequences are the worst for those with the least social, network and economic capital. Crucially we highlight the problematic normalisation of the absence of reliable primary care services for chronic illness in India, in rural India specifically. We signpost implications for research, and for policy and practice in India and similar health system contexts, i.e. those with weak primary care and poor regulation of the private sector. We argue that in India, having in place accessible, good quality, and trustworthy sources of advice and care for chronic illness at the first point of call, for all, is critical. We contend that this first point of call should be quality, public primary care services. We conclude that if such arrangements are in place in public services, people will use them. • Lack of reliable, trustworthy advice and care is a big gap in India's health system. • Being misled and suffering catastrophic consequences of ill-health is the result. • People need to be protected from bad actors in their care-seeking journeys. • People want reliable, trustworthy advice and care, at their first point of call. • India's health system must urgently act to ensure appropriate care at all levels. [ABSTRACT FROM AUTHOR]

This paper investigated whether the commonly observed immigrant health advantage persists among undocumented immigrants in the U.S. and provides nationally representative evidence on the health of this vulnerable population. Data were derived from pooled cross-sections of the National Health Interview Survey (NHIS, 2000–2018). The legal status of foreign-born NHIS respondents is imputed using a non-parametric machine learning model built based on information from the 2004, 2008 and 2014 cohorts of the Survey of Income and Program Participation (SIPP). Multivariate logistic regression analysis indicated that, despite exposure to numerous additional risk factors, the undocumented population experienced a more pronounced Healthy Migrant Effect, with lower odds of reporting fair or poor self-rated health, any physician-diagnosed chronic conditions or being obese. The observed patterns in undocumented health outcomes may be related to the additional challenges and exclusionary policies associated with undocumented migration that could in turn lead to a more pronounced selection of healthy and resilient individuals. • Undocumented immigrants had 26% lower odds of reporting poor or fair health. • Undocumented immigrants had 23% lower odds of having been diagnosed with a chronic condition. • Undocumented immigrants had 8% lower odds of being obese. • Differences in health behaviors do not explain the health advantage of undocumented immigrants. • Residence in the US 5+ years is positively associated with worse health outcomes. [ABSTRACT FROM AUTHOR]

Abstract: This paper assesses how the relationship between health and educational attainment has changed over the last three decades. We examine trends in disease prevalence and self-reported health using the US National Health Interview Survey for five chronic conditions—arthritis, diabetes, heart disease, hypertension, and lung diseases. The sample is limited to non-Hispanic Whites ages 40–64 to focus on the value of education and not changing representation of minority populations. We find that health benefits associated with additional schooling rose over time by more than ten percentage points as measured by self-reported health status. This can be attributed to both a growing disparity by education in the probability of having major chronic diseases during middle age, and better health outcomes for those with each disease. The value of education in achieving better health has increased over the last 25 years; both in protecting against onset of disease and promoting better health outcomes amongst those with a disease. Besides better access to health insurance, the more educated increasingly adapted better health behaviors, particularly not smoking and engaging in vigorous excercise, and reaped the benefits of improving medical technology. Rising health disparities by education are an important social concern which may require targeted interventions. [Copyright &y& Elsevier]

Abstract: Over the past twenty years, there has been considerable interest in individuals’ experience of chronic illness. In addition to the more established concerns of medical sociology, recent policy reflects an interest in how individuals manage their condition. Using material from qualitative interviews with 23 individuals carried out in the United Kingdom, this paper examines a person’s experience following encephalitis, as a way of exploring the potential value of current policy initiatives associated with self-management. Our findings suggest that individuals’ illness experiences become embedded in conditional acceptance derived from and sustained through their social relationships. This raises a fundamental policy tension: is the purpose of current self-management strategies to help individuals cope better with illness or with the context in which their illness experience is realised? We conclude that policy needs to question how it ‘imagines’ long-standing conditions, without recourse to generalised notions of coping and adjustment. This, in turn, means adapting a less instrumental and more contextualised approach to self-management. [Copyright &y& Elsevier]

Abstract: Endometriosis is a chronic gynaecological condition of uncertain aetiology characterised by menstrual irregularities. Several studies have previously identified a lengthy delay experienced by patients between the first onset of symptoms and eventual diagnosis. Various explanations have been advanced for the diagnostic delay, with both doctors and women being implicated. Such explanations include that doctors normalise women''s menstrual pain and that women might delay in seeking medical advice because they have difficulty distinguishing between ‘normal’ and ‘abnormal’ menstruation. It has been suggested that the diagnostic delay could be reduced if women were trained in how to distinguish between ‘normal’ and ‘abnormal’ menstrual cycles. In this paper I argue that whilst these may be factors in the diagnostic delay, women''s reluctance to disclose problems associated with their menstrual cycle may be a more significant and hitherto neglected factor. I argue women are reluctant to disclose menstrual irregularities because menstruation is a ‘discrediting attribute’ () and disclosure renders women vulnerable to stigmatisation. Women actively conceal their menstrual irregularities through practices of the ‘menstrual etiquette’ () which involves the strategic concealment of menstrual problems. This argument is supported through an analysis of the experiences of 20 Australian women diagnosed with endometriosis. The ramifications of this analysis for chronic pain conditions more generally and for practical strategies designed to address the endometriosis diagnostic delay are considered. [Copyright &y& Elsevier]

Abstract: This paper investigates the association between individually measured socioeconomic status (SES) and all-cause survival in colorectal cancer patients, and explores whether factors related to the patient, the disease, or the surgical treatment mediate the observed social gradient. The data were derived from a nationwide clinical database of all adenocarcinomas of the colon or rectum diagnosed in Denmark between 2001 and 2004 (inclusive). These data were linked to those from several central registries providing information on income, education, and housing status, as well as to data on comorbidity from previous hospitalizations and use of medication. Only patients with colorectal cancer as their first primary tumour and those born after 1920 were included. A total of 8763 patients were included in the study. Cox proportional hazard regression models revealed a positive social gradient in survival for increasing levels of education and income, and in owners versus renters of housing. A series of regression analyses were used to test potential mediators of the association between the socioeconomic indicators and survival by stepwise inclusion of lifestyle factors (smoking, alcohol intake, body mass index), comorbidity, stage of disease, mode of admission, type of operation, specialization of the surgeon, and curative versus palliative resection. A causal diagram guided the analyses. Inclusion of comorbidity, and to a lesser extent lifestyle, reduced the variation associated with SES, while no evidence of a mediating effect was found for disease or surgical treatment factors. This indicates that the difference in survival among colorectal cancer patients from different social groups was probably not caused by unintentional differences in treatment factors related to surgery, and suggests that primary prevention of chronic diseases among the socially deprived might be one way to reduce social differences in prognosis. [Copyright &y& Elsevier]

Abstract: The results of recent research have led to the increased advocacy of shared decision-making regarding medical treatment. Nonetheless, only a limited number of studies have focused on the process of decision-making in real-time encounters. The present paper aims to document and analyze this process. Specifically, we assess whether these decisions are the result of partnership or of persuasive tactics based on power and hierarchical relationships. We will describe and analyze different strategies used by pediatric gastroenterologists in breaking bad news encounters, as well as their consequences. The analysis is based on a multi-method, multi-participant phenomenological study on breaking bad news to adolescents and their families regarding a chronic illness. It included 17 units of analysis (actual encounters and 52 interviews with physicians, parents and adolescents). Data were collected from three hospitals in Northern Israel using observations and audiotapes of diagnosis disclosure encounters and audio-taped interviews with all participants. The analysis identified eight different presentation tactics used in actual encounters during which physicians made various use of language, syntax and different sources of power to persuade patients to agree with their preferred treatment choice. The tactics included various ways of presenting the illness, treatment and side effects; providing examples from other success or failure stories; sharing the decision only concerning technicalities; and using plurals and authority. The findings suggest that shared decision-making may be advocated as a philosophical tenet or a value, but it is not necessarily implemented in actual communication with patients. Rather, treatment decisions tend to be unilaterally made, and a variety of persuasive approaches are used to ensure agreement with the physician''s recommendation. The discussion is focused on the complexity of sharing a decision, especially in the initial bad news encounter; and the potentially harmful implications on building a trusting relationship between the physician and the family when a decision is not shared. [Copyright &y& Elsevier]

The study examines dietary advice-giving in regular consultations for patients with chronic conditions in two types of clinical practices: Traditional Chinese Medicine and Western Medicine practiced in mainland China. Dietary habits are unanimously considered relevant to the patient's health, particularly in chronic conditions. This article reports the differences in where and how dietary advice is occasioned and co-constructed by participants in two settings. One significant finding of this paper is that while Traditional Chinese Medicine doctors take dietary talk to instruct patients and put it into the treatment recommendation, WM doctors may treat it as incidental and only valuable for diagnostic assessment, leaving its treatment opaque and not discussed with the patient. Data are in Mandarin Chinese. Using Conversation Analysis, the article describes the interactional organisation of dietary advice delivery in different medical practices and ascribes their differences to clinical pathology. • Diet as a treatment proposal or not. • Infrequent dietary advice-giving in WM encounters. • Frequent dietary advice-giving in TCM closings. • The organisation of advice reflects clinical understandings of diet. [ABSTRACT FROM AUTHOR]

The epidemiological burden of chronic diseases is increasing worldwide and there is very little empirical evidence regarding the economic impact of chronic diseases on individuals and households. The primary objective of this paper is to explore the evidence on how chronic diseases affect household healthcare expenditure, non-health consumption, labour (earned) income, and to demonstrate how transfers may provide some insurance against shocks from chronic diseases. We have explicated a two-part Heckit model on household level data obtained from the Living Standard Measurement Surveys (LSMS) from Russia to control for nontrivial proportion of zeros in the dependent variables, skewed distribution of expenditure data and endogeneity. The results indicate that chronic diseases are significantly associated with higher levels of household healthcare expenditure in Russia and productivity losses reflected by reduced labour supply and reduced household labour income. Non-healthcare expenditure also increased. Results suggest that households are able to insure non-health consumption against chronic diseases, possibly from transfers, which also increased. In addition, socioeconomic status indicators significantly explained the impact of chronic diseases on households. Insurance and higher average education in households were associated with higher healthcare expenditure. Household transfers were significant in Russia despite an appreciable level of insurance cover. We conclude that households depend on informal coping mechanisms in the face of chronic diseases, irrespective of insurance cover. These results have implications for policies regarding the financing of treatment and control of chronic diseases in the country studied. [Copyright &y& Elsevier]

Abstract: Chronic illness such as multiple sclerosis (MS) is often associated with ‘biographical disruption’, a concept that is derived from qualitative narrative analyses examining how people make sense of their illness in the context of their lives [Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4, 167–182]. This paper attempts to operationalise the idea of disruption to one''s life trajectory in quantitative analysis by examining the social, economic and emotional disruption associated with MS. A number of studies have suggested that it impacts negatively on employment, income and sexual relationships; however previous research has been based upon samples of people with MS (pwMS), with a dearth of studies comparing pwMS with the general population. This study reports a systematic comparison of MS and non-MS households to enable the impact of MS to be quantified in terms of household composition and marital status; household income; economic activity; and to determine whether biographical disruptions such as relationship breakdown or unemployment are more or less prevalent among those affected by MS compared to the general population. The MS sample came from randomly selected members of the UK MS Society (n=783) and those accessing the MS Society website (n=133). Data for the general population came from the 2001/02 British General Household Survey (GHS). Cases from the MS Society sample were matched using propensity scoring with cases from the GHS. The results of the matched analysis show that both men and women with MS are significantly less likely to be employed than those in the general population and are significantly more likely to have a ‘below average’ household income, despite the fact that they are in a higher social class and have higher educational levels than people in the general population. Differences between the MS and GHS samples in terms of marital status become non-significant when socio-demographic variables are controlled for using propensity scoring. This study provides robust evidence on how MS impacts on and disrupts the life of the person with MS and their household in terms of income and employment. [Copyright &y& Elsevier]

Abstract: Chronic illness is disruptive, threatening people''s sense of identity and taken for granted assumptions. Transformations in values, expectations and life priorities are likely to be experienced and in order to regain a coherent sense of self, people must interpret their experiences. People with difficult to diagnose illnesses can find themselves living with greater uncertainty and stigma. This paper explores how people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) describe and interpret their illness experience by applying Arthur Frank''s narrative typologies to analyse interviews with 17 British people with CFS/ME. The analysis proposes that a trajectory of narrative typologies is experienced, starting with a restitution narrative, moving to a chaos narrative and, for most, back to a restitution narrative and on to a quest narrative. The presentation of narrative types put forward by people living with CFS/ME differ to those presented by people who are HIV positive and have been treated for breast cancer. [Copyright &y& Elsevier]

Welfare-to-work programmes promoting employment of people with a disability or chronic illness are an expanding aspect of welfare reform in the UK. What evidence is there of impact on employment outcomes? This paper presents a systematic review of the evidence on UK policy initiatives. Both quantitative and qualitative studies were identified: 5399 abstracts were located, from which 16 studies were critically appraised. Overall, each of the five main welfare-to- work strategies operating in the 1990s helped people with disabilities into work, who were previously on benefits. The proportion of participants gaining employment after involvement ranged from 11 % to 50%, dependent on characteristics of participants, such as lob-readiness', as well as wider labour market context. As most studies were uncontrolled, it was difficult to determine if the improved employment chances were due to the effectiveness of the welfare-to-work interventions themselves or to external factors. Wider impact, such as uptake of schemes as a proportion of the total target population, was weak. The qualitative components identified barriers and facilitators concerned with effective implementation, to aid design of future initiatives. [ABSTRACT FROM AUTHOR]

In the last three decades, mothers of children who have chronic illnesses or disabilities have been studied extensively. With some notable exceptions, most research has overlooked the socio-political context of disability and has interpreted maternal behaviours and feelings in negative or psychopathological terms. In this paper we report the results of using Pierre Bourdieu''s central concepts to reanalyse three independent qualitative studies focused on mothers’ accounts of raising children with severe disabling conditions. We illustrate the logic of mothers’ practices and conclude that they represent strategic manipulations of accessible bodily, cultural and symbolic capital consistent with the ‘rules of the game’ across multiple fields. Mothers struggled to establish and maintain the personhood and value of their children, and to obtain resources within a broader context of body normativeness, exclusion and inequity. This Bourdieusian rendering of the logic of maternal practices has important implications for research and paediatric practices. [Copyright &y& Elsevier]

Chronic fatigue syndrome (CFS) is a relatively new disease that is difficult to diagnose. It is also a contested disease immersed in dispute about whether it is a physical or psychiatric reality. Sufferers often claim to experience not only the physical challenges of the disease, and these can be extensive, but also, initially, the anomie of suffering from a condition whose very reality is debated both in the medical and in the wider communities. Theories of self in illness emphasize how people who are diagnosed as chronically ill work hard as they seek to maintain previous, or to develop supernormal, selves. Such goals are cast in a critical light by Foucault''s notion of the technologies of self in the context of circulating neo-liberal discourses. As people with CFS, lacking an uncontested medical diagnosis, search for meaningful self-identities, they resist previously available discourses to take up an alternative discourse, one that we call radicalized selves. This paper raises questions about the constraints and liberties, power and powerlessness associated with a clear and undisputed medical diagnosis. It suggests a model of the self in chronic illness that considers not only changes in body and biography but also the availability of an uncontested diagnosis. [Copyright &y& Elsevier]

This paper describes a study of older people''s interpretations of a survey question about long-standing illness, disability or infirmity. This and similar questions are frequently used in various studies and surveys that influence policy and planning. With population ageing and growing concern about the health of older people, we sought to examine the survey question''s relevance to older people. Following-on from a cross-sectional survey of 999 people aged 65 and over in the UK, we explored their interpretations of the survey item by asking it in the context of in-depth interviews with 24 respondents. We found that few of our respondents subscribed to the constructs of long-standing illness, disability or infirmity that surveys often employ. Older people''s descriptions of their health status in response to a “standard-issue” survey question are informed by their understandings of health itself as well as elements such as control, engagement with health service providers, time and ageing. This implies that questionnaire-based surveys may not only be unable to capture the meaning of chronic illness to older people, but also its prevalence. We conclude on a methodological note by reminding ourselves that answers to survey and in-depth interviews are narratives told about health status. As such, both represent many facets of social and cultural life, and are best assessed as “trustworthy” rather than “truthful”. [Copyright &y& Elsevier]

For people with chronic illnesses in low-and-middle-income countries, access to enabling resources that contribute to health, economic and social resilience such as continued employment, often fall outside the health sector's remit or delivery of national structural protection. In the absence of sufficient laws and policies that mitigate discrimination and enhance reasonable work modifications, private employers have a high degree of agency and discretion in how they hire, manage, or terminate employees with chronic illnesses (ECI). There is a scarcity of research on how employers make decisions under these conditions. Using a constructivist grounded theory approach, we interviewed and analysed data from 30 human resource (HR) professionals and decision-makers within private organisations in Klang Valley, Malaysia (June 2015–September 2016). In this paper, we use 'ethics of care' as an analytic, and moral lens to present HR's decision-making rationales in caring for and managing ECI. Respondents described the positive influence of international practices, including through parent company policies, as a reference for best practice. While overt bias and discriminatory perceptions were predictably described, participants also discussed care as relational organisational culture, and strategy, albeit selectively. Apart from illness factors such as duration and severity, descriptions of 'selective caregiving' included considerations of an employee's duration in organisations, the perceived value of the employee to employers, organisation size, ethos, resources and capabilities, and how organisations managed the uncertainty of illness futures as a potential risk to organisation outcomes. Selective caregiving can contribute to social, economic and health inequalities in populations with chronic illness. Nevertheless, global health actors can use the problems identified by participants, as entry points to engage more closely with employers and the broader private and commercial sectors in LMICs, to facilitate more inclusive care, and care-based intersectoral work to address the social and economic determinants of health. • Scarce research & policy on the employment of people with chronic illness in LMICs. • 'Care' as a lens to understand scope and gaps in the management of ECI. • Employers make hiring and managing decisions, and facilitate care. • Selective caregiving can contribute to health and economic inequalities. • Tensions as entry points to engage with employers as economic determinants of health. [ABSTRACT FROM AUTHOR]

Large hospitals in China are overcrowded, while primary care tends to be underutilized, resulting in inefficient allocation of resources. This paper examines the impacts of a policy change in a mandatory public employee health insurance program in China designed to encourage the utilization of primary care by reducing patient cost-sharing. We use a unique administrative insurance claim dataset from the Urban Employee Basic Medical Insurance (UEBMI) scheme between 2013 and 2015. The sample includes 40,024 individuals. We conduct an event-study analysis controlling for individual fixed effects and find that the change in cost-sharing increased primary care utilization, decreased non-primary care utilization, and increased total outpatient utilization without impacting total spending. In addition, the policy change did not affect the likelihood of having avoidable inpatient admissions. Further, patients with hypertension or diabetes increased their primary care utilization even when using additional coverage for patients with chronic diseases, the cost-sharing rates for which did not change during the period of our study, rather than their standard UEBMI benefits. This study provides evidence that changes in cost-sharing can affect healthcare utilization, suggesting that supply-side incentives can play an important role in building a primary care–based integrated healthcare delivery system in China. • A change in cost-sharing for primary care increased primary care utilization. • The policy change also led to a decrease in non-primary care utilization. • Incentives can help build a primary care–based integrated healthcare system. [ABSTRACT FROM AUTHOR]

Reports of work change and transitions are common amongst individuals with chronic illnesses such as multiple sclerosis (MS). However, there is little research on the lived experience of these work transitions. The scarcity of this research is particularly evident within low-and-middle-income countries, where protection laws and resources such as anti-discrimination laws and reasonable work modifications may not exist or be well enforced. In this paper, we explore how and why individuals with MS seek and achieve work transitions in the structural context of Malaysia. We interviewed ten working individuals with MS (July–december 2015) using a joint hermeneutic phenomenology and constructivist grounded theory approach. Using a broad conceptual lens of 'sustainable careers', we examine their careers as a series of experiences, decisions, and events, paying attention to the influences of context, time, their personal levels of agency and sense of meaning. Participants described work transitions as early as within the first year of diagnosis, that were prompted by voluntary, involuntary and semi-voluntary reasons. Key aspects of the process of seeking new roles included an exploration of alternative roles and paths, and then acquiring, trialing/adapting and remaining engaged in their new roles. Participants identified the perception and experience of 'being unemployable', based on how their diagnosis and short-term symptoms were responded to by employers. Nevertheless, participants used various strategies and career resources to obtain and maintain meaningful work roles. However, success in obtaining or maintaining new roles were not equally achieved. This research draws attention to the cumulative economic disadvantage of a chronic illness diagnosis, even at milder and episodic stages. Furthermore, it reiterates the need for cohesive structural protection in low-and-middle-income countries to facilitate a more equal ability to remain economically resilient and capable of engaging in meaningful long-term careers when living with a chronic illness. • Chronic illness even in an episodic phase, disrupts careers and prompts transitions. • Offers careers scholarship as a way to study work course in illness populations. • Probes the sequence of post-diagnosis career transitions in a LMIC setting. • Sustainable careers are not equitably achieved by using career resources alone. • Structural change is needed to support career sustainability in illness populations. [ABSTRACT FROM AUTHOR]