Search

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]

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]

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]

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]

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]