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In recent years, assistive technologies have gained acceptance as tools for supporting chronically ill patients in achieving improvements in physical activity. However, various healthcare and sociological studies show contradicting results regarding the physical and social impact of using such devices. This paper explores real‐time user appropriation of an assistive monitoring/tracking device, the pedometer, in a healthcare intervention, with a particular focus on the technology identities users attribute to the pedometer. The study site was a rehabilitation programme at a local Danish health centre supporting patients with chronic obstructive pulmonary disease. As part of this empirical study, six focus‐group interviews were conducted with patients before and after they used pedometers. The analysis of respondents' accounts shows that monitoring devices become part of users' complex socio‐technical ensembles in which the use of the device and its tracking of activity is constantly negotiated through experimentation with type and frequency of use; interpretation of knowledge and experience gained via the device; and negotiation of expectations, wellbeing, and the value of quantified knowledge for the management of chronic illness. On the basis of these findings the paper brings together and advances sociological scholarship on chronic illness, embodiment, the quantified self and technology adoption. [ABSTRACT FROM AUTHOR]

Children and young people (CYP) with sickle cell disease (SCD) are a 'missing voice' in the debate on biography and sociology of chronic illness, meaning we know little about the social consequences of the illness for CYP. This paper examines the meaning of fatigue (a common symptom) for adolescents with SCD. Analysing 24 in‐depth interviews with adolescents aged 12–17 years in Ghana, we draw on the distinction proposed by Bury (1988) between 'meanings as significance' and 'meanings as consequence' to examine biographical aspects of fatigue. We argue that concepts of 'biographical disruption' and 'normal illness' do not easily accommodate the experience of CYP with congenital chronic illnesses like SCD, as their sense of (un)disruption and normality/continuity is contextualised relative to normative expectations about what it is to be a young person. At biographical transition points, illness/symptoms present from birth may evolve, shift and become experienced as 'new', 'different', or 'non‐normal'. They may become restrictive rather than continuous or disruptive. These experiences are influenced primarily by normative biographical expectations and the pursuit of identity affirmations. We propose that biographical restriction, biographical enactment, biographical abandonment and biographical reframing are more relevant concepts for understanding the experiences of CYP living with SCD. [ABSTRACT FROM AUTHOR]

Abstract: For almost half a century social scientists have explored the phenomenon of chronic illness. In this paper, I examine how the concept of chronicity participates in present‐day mental health care settings. Using ethnomethodology and material‐semiotic theory within science and technology studies, I investigate how the classification ‘chronically mentally ill’ interacts with the everyday socio‐material shaping of public mental health care in the context of professional institutions. Drawing on ethnographic fieldwork in a psychiatric day hospital and in a community day care centre in Berlin, Germany, I demonstrate how the classification of chronicity acts as a tool of description (of people or their conditions), regulation (of therapy, health care or administration), and connection to infrastructures of care (practised technologies or standards of various kinds). In these ways, I argue, the classification engages in actions of producing treatability, arranging resources, demarcating responsibilities, practicing accountability, and doing presence. Notably, community mental health care has developed into a designated territory of the concept: explicitly arranged for ‘the chronically mentally ill’ as a human kind, we can take everyday life in these institutions as instructive of how chronicity is defined in daily practice. [ABSTRACT FROM AUTHOR]

This paper examines how people with chronic illnesses respond to absences of continuity and coordination of care. Little work has been done on how the ill person might mitigate flaws in a less than optimal system. Our qualitative research, carried out among 91 participants in Australia, reveals that people with chronic illnesses create strategies to facilitate the management of their care. These strategies included efforts to improve communication between themselves and their health care practitioners; keeping personal up-to-date medication lists; and generating their own specific management plans. While we do not submit that it is patients' responsibility to attend to gaps in the health system, our data suggests that chronically ill people can, in and through such strategies, exert a measure of agency over their own care; making it effectively more continuous and coordinated. Participants crafted strategies according to the particular social and bodily rhythms that their ongoing illnesses had lent to their lives. Our analysis advances the view that the ill body itself is capable of enfolding the health system into the rhythms of illness - rather than the ill body always fitting into the overarching structural tempo. This entails an agent-centric view of time in illness experience. A Virtual Abstract of this paper can be found at: [ABSTRACT FROM AUTHOR]

In this collaborative autoethnography, we examine the processes whereby people may reframe their interpretations and understandings of health and illness as a result of new diagnostic information. In so doing, we utilise the first author's experience receiving a conclusive diagnosis of cystic fibrosis after years of misdiagnosis to outline some ways changes in diagnosis facilitate shifts in illness management, the nature of health and illness and the experience of the self in relation to health and medicine. Furthermore, we discuss the ways this case reveals the importance of examining and comparing the social construction and transformation of health and illness within and between different individual and collective lived experiences over time. In closing, we draw out theoretical and empirical implications for understanding transformations in the nature of health and illness over the life course as well as future directions for research investigating shifts in illness management and understanding over time (A virtual abstract of this paper is available to view at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA). [ABSTRACT FROM AUTHOR]

Abstract: This article explores the complicated and often‐contradictory notions of choice at play in complex care management (CCM) programmes in the US healthcare safety net. Drawing from longitudinal data collected over two years of ethnographic fieldwork at urban safety‐net clinics, our study examines the CCM goal of transforming frequent emergency department (ED) utilisers into ‘active’ patients who will reduce their service utilisation and thereby contribute to a more rational, cost‐effective healthcare system. By considering our data alongside philosopher Annemarie Mol's (2008) conceptualisation of the competing logics of choice and care, we argue that these premises often undermine CCM teams' efforts to support patients and provide the care they need – not only to prevent medical crises, but to overcome socio‐economic barriers as well. We assert that while safety‐net CCM programmes are held accountable for the degree to which their patients successfully transform into self‐managing, cost‐effective actors, much of the care CCM staff provide in fact involves attempts to intervene on structural obstacles that impinge on patient choice. CCM programmes thus struggle between an economic imperative to get patients to make better health choices and a moral imperative to provide care in the face of systemic societal neglect. (A virtual abstract of this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA). [ABSTRACT FROM AUTHOR]

Abstract: Coping with chronic illness encapsulates both practical and emotional aspects of living life in relation to one's long‐term health condition(s). Dominant health psychology approaches for understanding coping, which underpin a more recent policy discourse on ‘self‐management’, focus sharply on the person affected by illness and potentially mask the influence of overarching social structure. In this paper we draw on qualitative interviews with 48 people living with long‐term conditions (LTCs), in order to highlight the role that structural configurations such as healthcare systems may play in either helping or hindering people's efforts to cope with chronic illness. We argue that coping is a social process in which health and related services, situated within their wider political‐economic contexts, play an active role in shaping people's attempts to live well with LTCs. More specifically, health systems are sites of social and cultural capital exchange that can differentially mobilise coping resources through access, continuity of care, and coordination across services. Whilst it is essential to recognise the personal agency of people living with chronic illness, it is also vital to acknowledge the underlying inequalities that affect the ways in which services can support such resourcefulness. [ABSTRACT FROM AUTHOR]

During the last century demographic and epidemiological transitions have had a radical impact upon health and health service provision. A considerable body of research on the sociological aspects of living with chronic illness has accumulated. Debate has focused on how social environments shape disability-related experiences, and the extent to which individual responses define health outcomes. Through the establishment of the Expert Patients Programme (EPP) in 2001, the Department of Health has sought to enhance NHS patients’ self-management capacities. This paper discusses three areas relevant to this: the policy formation process leading up to the EPP's present stage of development; the evidence base supporting claims made for its effectiveness; and the significance of psychological concepts such as self-efficacy in approaches to improving public health. The conclusion discusses NHS developments in primary care and public involvement in health and healthcare, and the implications that initiatives such as the EPP carry for the future. It is argued that to facilitate a constructive process of ‘care transition’ in response to epidemiological and allied change, awareness of cognitive/psychological factors involved in illness behaviours should not draw attention away from the social determinants and contexts of health. [ABSTRACT FROM AUTHOR]

Chronic obstructive pulmonary disease ( COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose 'biographical we' as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers. [ABSTRACT FROM AUTHOR]

Hypertension is a common condition which disproportionately affects African Caribbean people in England, yet this experience is rarely reported in the literature. Whilst a body of literature exists that explores chronic illness experience, little attention is paid to hypertension, nor to ethnicity as a mediating concept in chronic illness experience. This paper explores the meaning and consequences of hypertension for African Caribbean people residing in England. The study conducted was a qualitative study, informed by the ethnographic tradition. The study methods included the conduct of two focus group interviews (10 participants), 21 in-depth interviews and five vignette interviews. Thirty-six people in total participated in the study, both men and women, aged between 37 and 82 years (median age = 59.5 years) in two English cities. The sample was generated by contacting GP surgeries, community groups and associations and included economically active and retired people. The narrative accounts provided illuminate the personal biographies of the mid-life and older participants in the study, providing evidence as to how issues such as ethnicity, migration, cultural adaptation, racism and discrimination may impact upon the chronic illness experience. Participants’ understandings of their self-defined condition of high blood pressure differed greatly from medical conceptualisations of the condition of hypertension. The implications of the study are that in order to provide effective health and social care for individuals of African Caribbean origin with hypertension, care-providers require insight into how migration and cultural adaptation may create major disruption to an individual's life trajectory, to which the subsequent diagnoses of chronic illness are relative in terms of the individual's response and adaptation. [ABSTRACT FROM AUTHOR]

How family doctors conceptualise chronic illness in the consultation has important implications for both the delivery of medical care, and its experience by patients. In this paper, we present the results of a re-analysis of qualitative data collected in a series of studies of British family doctors between 1995 and 2001, to explore the ways in which the legitimacy and authority of medical knowledge and practice are organised and worked out in relation to three kinds of chronic illness (menorrhagia; depression; and chronic low back pain/medically unexplained symptoms). We present a comparative analysis of (a) the moral evaluation of the patient (and judgements about the legitimacy of symptom presentation); (b) the possibilities of disposal; and (c) doctors’ empathic responses to the patient, in each of these clinical cases. Our analysis defines some of the fundamental conditions through which general practitioners frame their relationships with patients presenting complex but sometimes diffuse combinations of ‘social’, ‘psychological’ and ‘medical’ symptoms. These are fundamental to, yet barely touched by, the increasingly voluminous literature on how doctors should interact with patients. Moving beyond the individual studies from which our data are drawn, we have outlined some of the highly complex and demanding features of what is often seen as routine and unrewarding medical work, and some of the key requirements for the local negotiation of patients’ problems and their meanings (for both patients and doctors) in everyday general practice. [ABSTRACT FROM AUTHOR]

Taking as its point of departure the contested nature of the body, in mainstream theory and the sociology of health and illness alike, this paper seeks, albeit tentatively, to chart a critical realist alternative to these debates using the controversial terrain of chronic illness and disability as a case study. A critical realist approach, it is suggested, enables us to: (i) bring the biological body, impaired or otherwise, 'back in'; (ii) relate the individual to society in a challenging, non-conflationary or non 'unidirectional' way; and (iii) rethink questions of identity, difference and the ethics of care through a commitment to real bodies and real selves, real lives and real worlds. Within all this, it is argued, modern medicine does indeed, contra disability theory and postmodern calls for the pursuit of so-called 'arche-health', have a continuing role to play in the mitigation of human pain and suffering, including the realities of chronic disabling illness conditions and the associated 'greying' of Western populations. [ABSTRACT FROM AUTHOR]

The article author comments on views of social scientists Michael Kelly and David Field on a paper on medical sociology and chronic illness written by him. Analyzing both the sociologists views, it is found that they suggest, self and identity are core aspects of everyday experience which the onset of illness and the change in bodily functioning profoundly affects. It is this interplay play between self and identity, which they argue, provides a "theoretical bridge" to "manage" the relation between biological and social facts. The author points out that the arguments given by Kelly and Field's article are not new, and were already there in various literatures on chronic illness, disability and stigmatization. Much of their arguments seem to be a rehearsal of very familiar arguments, albeit this time with more than a nod in the direction of biology and the physicality of the human body. The author concludes by proposing an extension of Kelly and Field's argument about the body, self and identity.

The concept of 'medicalisation' has informed the sociology of health and illness for several decades. Typically, it has been discussed with critical connotations, although some commentators have suggested that it is not unequivocally negative. This paper seeks to clarify the concept, suggests that medicalisation can be both helpful and unhelpful, and identifies the characteristics of beneficial medicalisation. Using data from doctors and patients who are dealing with a refractory, relapsing and disabling condition - Chronic Fatigue Syndrome - we explore the impact of medicalisation in different forms on the participants in the medical encounter. Both doctors and patients were, at times, uneasy about the possibility of a self-fulfilling prophecy through which a medical diagnosis might generate deleterious consequences from a comparatively trivial complaint. However, when such motivations prompted doctors to withhold information (such as a suspected diagnosis), the results were generally increased 'difficulties for the patient. Whether intentional or accidental, medical dominance in any form consistently generated problems for patients. But when medical explanations were mobilised to enhance the coherence of the patient's experience of symptoms, patients found medicalisation to be helpful. Patients whose doctors took their symptoms seriously gained legitimation which helped them in a range of. social relationships. They also received support for their efforts at self-management. Legitimacy, coherence and ,support are all necessary c0mponents for improved .well-being, and doctors can supply such assistance even in the absence of unequivocal diagnosis and proven therapeutic interventions. [ABSTRACT FROM AUTHOR]

The sociological conceptualisation of chronic illness requires a sociology which indicates the physicality of the body theoretically. The aim of this paper is to demonstrate how the body might be integrated into sociological accounts of the experience of chronic illness in a way that acknowledges biological and social facts. Central to our argument is the connection between bodily aspects of self and identity. Self and identity are core aspects of everyday experience and of the everyday experience of illness. With the onset of illness bodily functioning alters and self-conceptions and identity may also change. The body, which in many social situations is a taken for granted aspect of the person, ceases to be taken for granted once it malfunctions. The bodily basis of chronic illness has to be attended to because it limits or interferes with other physical and social activities. The connection between biological and social facts is explored using the concepts of self and identity. [ABSTRACT FROM AUTHOR]

Long COVID is a novel chronic illness with a variety of symptoms that people who have labelled themselves 'long‐haulers' experience for an extended duration following a COVID‐19 infection. We draw on in‐depth interviews conducted in March–April 2021 with 20 working‐aged adults in the U.S. who self‐identified as long‐haulers to understand the consequences for identities. The results demonstrate that Long COVID has important consequences for identities and sense of self. Long‐haulers described experiencing three stages of biographical disruptions: realising their illness experience as misaligned with sense of self and embodied, age‐based expectations; facing challenges to identities and changes in social roles; and reconciling illness and identity in the context of an uncertain prognosis. It remains unclear how long‐haulers will resolve biographical disruptions and identity conflicts, especially as scientific insights about this novel condition emerge. Such outcomes may depend largely on whether Long COVID remains a contested illness or medical knowledge progresses to improve their quality of life. For now, healthcare providers may approach Long COVID holistically to address the identity disruptions that long‐haulers face as they manage the consequences of this chronic illness. [ABSTRACT FROM AUTHOR]

To understand the complexities of managing long‐term conditions and develop appropriate responses, micro‐, meso‐ and macrolevels must be considered. However, these levels have not been combined in a single analytical framework of long‐term condition management (LTCM). This article aims to describe a framework of LTCM practice and research that combines societal levels and key agents. The actor‐level framework, based on the works of Abram De Swaan and Randall Collins, provides a broader understanding of LTCM as an interdisciplinary research field compared to previous contributions. The framework has three main advantages. First, it encourages knowledge production across levels and actors that address the complexity of long‐term illness management. Second, it broadens the scope of LTCM as an interdisciplinary research field and practice field. Finally, it facilitates the integration of knowledge production from different disciplines and research traditions. The framework could stimulate interdisciplinary research collaboration to enhance knowledge of processes and interactions influencing the lives of individuals with long‐term conditions. [ABSTRACT FROM AUTHOR]

Digital media offer the chronically ill, especially those who experience related isolation, unparalleled opportunities to connect with others. This article asks, how do these individuals ascribe meaning to and use these media to manage their condition and related isolation? Using the concepts of affordance and emotional community, and drawing on the findings from an Australian study on patients' use of digital media, we examine individuals' ambivalent ascriptions of media, which are both feared and distrusted for the risks they present and embraced as invaluable tools of social connection. We argue that this ambivalence is explicable in terms of the communities to which the chronically ill belong which are founded on strong emotional bonds. In a context in which individuals tend to feel isolated through pain and/or stigmatisation, digital media may offer powerful means for sharing and affirming their experiences, the subjective benefits of which may outweigh the perceived risks. The article discusses the functions and features of digital media that the chronically ill value and distrust and concludes by considering the implications of our analysis for strategies to address the needs of people who feel isolated as a consequence of their condition. [ABSTRACT FROM AUTHOR]

We utilise Bury's (1982) biographical disruption to examine young people's experiences of type 1 diabetes. Our findings show that young adults adopted various 'subject positions' across different illness contexts. The subject positions deployed are intended to produce a particular kind of normal embodied identity unaffected by diabetes. First, participants concealed their illness in public spaces and challenged cultural stereotypes of diabetes to maintain a normal illness biography. Disruption was ever present and required careful negotiation to avoid exposure of illness in public. Young adults upheld a 'normal public presentation'. Second, they resisted the medical system's pressure to adhere to glucose targets asserting and maintaining a subject position of 'independent and autonomous young adults'. Here, disruption was transient and temporary, present in the clinic but not always beyond. It remained in the background for much of the time until it was reinforced by parents or at meal times. Third, young adults acquired a 'pragmatic subject position' with diabetes viewed as complex but manageable, no longer a target for resistance. Frank's (1995) 'narrative restitution' is adopted to describe the transition to life with 'normal' illness. We argue that illness experience was 'liminal' and reflected the subject positions adopted by young adults. [ABSTRACT FROM AUTHOR]

While the biographical dimensions of chronic illness have been well researched, the concrete dimensions of patients' work have not been as thoroughly investigated as yet. With the growing concern for self‐management, such research would be timely. This study aims to better understand patients' invisible work by highlighting the causes of unintentional non‐adherence as well as strategies for adherence. For this purpose, it defines medical treatment adherence as the repetition of the pattern of tasks through which a patient succeeds, in a technical sense, in taking the right medication at the right time, in the right amount, for the right duration. Applying a failure modes and effects analysis approach to 48 semi‐structured interviews with Dutch patients, it shows the negative impact of schedule changes, pressure, positioning changes, lack of backup pills and lack of verification tools. Symmetrically, it highlights the role of anchoring, sequencing, positioning, cueing, correcting and verifying. This result points to the need for an analytical approach of patients' work and treatment adherence that would build on the role of routines in organisations and in the workplace. [ABSTRACT FROM AUTHOR]

This article presents findings from a longitudinal qualitative study (48 in-depth interviews with 12 women on antiretroviral treatment ( ART)) exploring the experience of living with HIV as a chronic illness in South Africa by applying the structural and interactionist perspectives on chronic illness. The structural perspective indicates that the illness experience needs to be contextualised within the wider framework of the women's hard-earned lives: throughout the interviews, the women tended to refuse singularising HIV/ AIDS and continuously framed the illness within the context of general hardship and adversity. Employing an interactionist perspective, the repeated interviews demonstrated the partial applicability of the concept of biographical disruption to the illness experience: most women experienced feelings of denial and disbelief upon diagnosis, but the availability of ART clearly mitigated the impact of HIV on their biographies. In addition, our findings demonstrate that the interaction between structural aspects, (stigmatising) social relations, and the illness (and its treatment) determines the never-ending cycle of identity appraisals, revisions and improvements, rendering the moral career of the HIV-positive women on ART a continuous work in progress. [ABSTRACT FROM AUTHOR]

This study examines the construction of age identity among older people with chronic conditions. Semi-structured interviews were conducted with 45 participants from two senior centres. Applying symbolic interactionism and the concept of stigma to participants’ narratives, we identified three categories of age identities: definitely old; definitely not old; and ambivalent about their age identity. Further, we examined the metaphors of agelessness and the mask of ageing, the relationship between chronological age and age identity as well as the age-related stereotypes that older people offered in their narratives of their experience of old age. Ideas about the meaning of old age itself varied, with some focusing on predominantly negative descriptors, while others saw it positively, i.e. as a time allowing for more freedom and self-exploration. The influence of chronic conditions on older adults’ age identities is more complex and nuanced than the characterisations promoted by ageist stereotypes. [ABSTRACT FROM AUTHOR]

This article takes the use of complementary medicine by a group of people living with HIV/AIDS as the starting point for exploring the options for living with chronic illness in contemporary western societies. Some authors have suggested that the situation of living with chronic illness may not be a significant departure from the process of negotiating choice that is theorised to be a defining feature of late-modern society and that there are now many ways of living with or ‘doing’ chronic illness. This article uses these theoretical concepts to explore the experiences of people who have lived with HIV/AIDS for a number of years. It is argued that while different options for managing chronic illness may exist, it is not always possible or desirable for individuals to put these choices into practice. The article is based on 18 qualitative interviews with people living with HIV/AIDS who were using complementary medicine. [ABSTRACT FROM AUTHOR]

'Quality of life' has become an important feature of research into patient outcomes, but an agreed definition of the term remains elusive. In order to empirically assess the meaning of quality of life for lay people, an ethnographic study was conducted using a sample of 22 patients suffering chronic, moderately severe asthma. The findings indicated that asthma was in general not considered to be important in the process of assessing or experiencing quality. The principal source of vaiue for respondents was described as the experience of happiness in the context of emotionally-significant social relationships. Sources of value appeared to be subject to variation between individuals and through time, implying that quality of life should be considered to be an existential concept. The process of attributing value to a subjective condition is best conceived of as an aesthetic one, involving an emotional engagement with (rather than rational evaluation of) everyday experience. [ABSTRACT FROM AUTHOR]

Stroke is popularly conceived of as an illness which shatters lives. The discourse of shattered lives, articulated more generally within the sociological literature on chronic illness as 'biographical disruption', is examined with reference to the experience of a sample of predominantly elderly, working class people living in the East End of London. We begin by exploring the interviewees' responses to the stroke as something which was 'not that bad', before going on to examine the place of the stroke within the context of these peoples' lives. Particular attention is paid to the ways in which age may mediate illness experience. [ABSTRACT FROM AUTHOR]