38 results
Search Results
2. Chronic illness as cultural disruption: The impact of chronic illness on religious and cultural practice.
- Author
-
Cluley, Victoria, Trivedi, Adya, and Burton, James O.
- Subjects
- *
CHRONIC diseases , *FAITH , *KIDNEY diseases , *WELL-being , *MINORITIES - Abstract
The relationship between religion and health tends to be framed positively. Religion has been found to act as a coping mechanism and source of support in times of ill health. In this paper, we focus on the disruptive effect of chronic illness on religious practice and cultural engagement. Drawing on interviews with ethnic minority adults with end‐stage kidney disease, who also identify as religious, we introduce the concept ‘cultural disruption’. While religious practice and belief was found to provide strength and comfort we also found that chronic illness had a disruptive impact on religious and cultural practice that participants attempted to manage. To highlight the potential disruptive effect of chronic illness on religious faith and cultural engagement we identify three elements of cultural disruption—disruption to religious practice, disruption to sense of self and identity and disruption to wellbeing. We conclude by suggesting that understanding and accounting for the potential of cultural disruption when diagnosing, treating and supporting people with chronic illness offers an alternative entry point to the life‐worlds of patients who identify as religious and the things that are important to them. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
3. Men, chronic illness and healthwork: accounts from male partners of women with endometriosis.
- Author
-
Hudson, Nicky, Law, Caroline, Culley, Lorraine, Mitchell, Helene, Denny, Elaine, Norton, Wendy, and Raine‐Fenning, Nick
- Subjects
BIOGRAPHY (Literary form) ,CHRONIC diseases ,EMOTIONS ,ENDOMETRIOSIS ,INTERVIEWING ,RESEARCH methodology ,PSYCHOLOGY of men ,HEALTH self-care ,PSYCHOLOGY of Spouses ,ACTIVITIES of daily living ,THEMATIC analysis ,FAMILY roles ,CAREGIVER attitudes - Abstract
Currently dominant in medical discourse, the concept of self‐management sees the responsibility for health and illness shift from the state to the individual. However, while this emphasis on individual responsibility and management has burgeoned, the role and status of partners and other family members in the management of chronic illness remains under‐theorised. While self‐management privileges individual responsibility for the management of chronic illness, the role of partners remains unclear. This paper utilises data from a study of heterosexual couples' experiences of living with the chronic gynaecological condition endometriosis to explore how male partners engage in its day‐to‐day management. In all, 22 couples participated in in‐depth, semi‐structured interviews with each partner interviewed separately (n = 44). Data were analysed thematically and dyadically, informed by an interpretivist relational approach. The paper utilises the concept of healthwork to describe the illness work, everyday life work, biographical work and emotion work men engaged in. The paper demonstrates how the conceptual value of healthwork is enhanced by incorporating an analysis of the emotional effort required in managing chronic illness. The paper illustrates the value of investigating the role of partners in managing chronic illness to provide a fuller account of the distributed and relational nature of healthwork. [ABSTRACT FROM AUTHOR]
- Published
- 2020
- Full Text
- View/download PDF
4. Biographical accounts of the impact of fatigue in young people with sickle cell disease.
- Author
-
Poku, Brenda Agyeiwaa and Pilnick, Alison
- Subjects
CHRONIC diseases ,INTERVIEWING ,EXPERIENCE ,PATIENTS' attitudes ,ATTITUDES toward illness ,QUALITATIVE research ,TERMS & phrases ,FATIGUE (Physiology) ,SICKLE cell anemia ,SYMPTOMS ,ADOLESCENCE - Abstract
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]
- Published
- 2022
- Full Text
- View/download PDF
5. ‘When you have children, you’re obliged to live’.
- Author
-
Wilson, Sarah
- Subjects
PSYCHOLOGY of the sick ,HIV-positive women ,MOTHERHOOD & psychology ,HIV infections ,AIDS-related complex ,MOTHER-child relationship ,DISEASES ,PARENTHOOD ,CHILD welfare ,CHRONIC diseases ,PSYCHOLOGY - Abstract
Recent work on biographical disruption has emphasised the critical importance of timing and context to the understanding of the effects of illness on identity. This paper takes a different approach by examining the inter-relationship between illness and key sources of identity, in this instance HIV infection and motherhood. It is argued that, viewed in this light, biographical disruption remains a powerful analytic framework with which to explore the intense threat which may be posed to key identities by chronic, potentially fatal illnesses, and the fundamental re-working of such identities occasioned by such threats. With reference to the empirical study on which this paper draws, it is shown that the twelve respondents’ emphasis on their need to survive and to protect their children, represented a fundamental re-formulation of their identities as mothers and, therefore, a type of biographical disruption while paradoxically also containing elements of biographical reinforcement. It is further argued that the incorporation of such key identities into the analysis problematises work that suggests that biographical disruption is less relevant to those who have experienced difficult lives, while also highlighting the need to take greater account of gender and caring responsibilities in further work in this field. [ABSTRACT FROM AUTHOR]
- Published
- 2007
- Full Text
- View/download PDF
6. Causal narratives in public health: the difference between mechanisms of aetiology and mechanisms of prevention in non‐communicable diseases.
- Author
-
Kelly, Michael P. and Russo, Federica
- Subjects
PREVENTION of chronic diseases ,CHRONIC diseases ,HEALTH promotion ,PREVENTIVE health services ,SOCIAL attitudes ,HEALTH & social status ,ATTITUDES toward illness - Abstract
Abstract: Research in the health sciences has been highly successful in revealing the aetiologies of many morbidities, particularly those involving the microbiology of communicable disease. This success has helped form a narrative to be found in numerous public health documents, about interventions to reduce the burden of non‐communicable diseases (e.g., obesity or alcohol related pathologies). These focus on tackling the purported pathogenic factors causing the diseases as a means of prevention. In this paper, we argue that this approach has been sub‐optimal. The mechanisms of aetiology and of prevention are sometimes significantly different and failure to make this distinction has hindered efforts at preventing non‐communicable diseases linked to diet, exercise and alcohol consumption. We propose a sociological approach as an alternative based on social practice theory. (A virtual abstract for this paper can be found at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA). [ABSTRACT FROM AUTHOR]
- Published
- 2018
- Full Text
- View/download PDF
7. Frailty as biographical disruption.
- Author
-
Cluley, Victoria, Martin, Graham, Radnor, Zoe, and Banerjee, Jay
- Subjects
FRAIL elderly ,CHRONIC diseases ,PHENOMENOLOGY ,EXPERIENCE ,BIOGRAPHY (Literary form) - Abstract
Biographical disruption positions the onset of chronic illness as a major life disruption in which changes to body, self and resources occur (Sociology of Health & Illness, 4, 1982, 167–182). The concept has been used widely in medical sociology. It has also been subject to critique and development by numerous scholars. In this paper, we build on recent developments of the concept, particularly those taking a phenomenological approach, to argue that it can also help in understanding other disruptive health‐related experiences across the life course, in this case the onset of frailty. We draw on the findings of 30 situated interviews with frail older people, relating their experiences of frailty to the concept of biographical disruption. We show that frailty shares many similarities with the experience of chronic illness. Using the lens of biographical disruption to understand frailty also offers insights relevant to recent debates around both concepts, and on the continued relevance of the idea of biographical disruption given changing experiences of health and illness, including the circumstances in which biographical disruption is more and less likely to be experienced. Finally, we reflect on the potentials and limitations of applying the concept to a health‐related condition that cannot be categorised as a disease. [ABSTRACT FROM AUTHOR]
- Published
- 2021
- Full Text
- View/download PDF
8. Boy Interrupted – Biographical disruption during the transition to adulthood.
- Author
-
Wedgwood, Nikki, Smith, Louisa, Hendl, Tereza, and Shuttleworth, Russell
- Subjects
CHRONIC diseases ,ETHNIC groups ,EXPERIENCE ,MASCULINITY ,PEOPLE with disabilities ,REFUGEES - Abstract
Most studies on the gendered aspects of biographical disruption are predicated on adult experiences of chronic illness, often based on heterogeneous samples. This paper goes beyond typologies by analysing the life‐history case study of 'Sam', a 23‐year‐old Australian man raised in a refugee family, who developed a disabling chronic health condition at 15 years of age. The analysis illustrates how critical contextual factors like life‐phase, combine with powerful social structures like ethnicity and gender to shape Sam's experiences of, and responses to, biographical disruption. Even before the onset of any symptoms, Sam was railing against the marginal position he occupied in the Australian gender order as a young Asian man. With little guidance on how to adapt his biography to integrate his new differently functioning body, Sam's transition to adulthood stalls, and he becomes in effect, a boy interrupted. [ABSTRACT FROM AUTHOR]
- Published
- 2020
- Full Text
- View/download PDF
9. The missing voice of the critically ill: a medical sociologist's first-person account.
- Author
-
Rier, David A.
- Subjects
CATASTROPHIC illness ,CRITICAL care medicine ,INTENSIVE care units ,HOSPITAL wards ,CHRONIC diseases ,ETHNOLOGY - Abstract
Existing sociological studies of critical illness deal mainly with providers and families, but seldom with patients, themselves. Moreover, most of the literature on the patient's experience involves chronic illness. Based on the author's experience as an intensive care unit (ICU) patient, this paper demonstrates that certain concerns of the post-Parsonian literature, such as full disclosure of information to patients and patients' negotiation and collaboration with physicians, are of minimal relevance for critically ill patients. This paper also discusses the notebook the author used in the ICU to communicate while on a respirator, thus unintentionally leaving a concurrent record of his experience, in a form of 'inadvertent ethnography'. This allowed him to reconstruct experiences rarely accessible to sociologists. Such notebooks can help us construct accounts of the ICU patient's experience, and move us towards a sociology of the critically ill patient. Potential topics for this new research area are suggested. [ABSTRACT FROM AUTHOR]
- Published
- 2000
- Full Text
- View/download PDF
10. Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept.
- Author
-
Williams, Simon J.
- Subjects
CHRONIC diseases ,ETIOLOGY of diseases ,MODERNITY ,LITERATURE ,EMOTIONS ,PSYCHOLOGY - Abstract
Taking as its point of departure Bury's (1982) concept of chronic illness as biographical disruption, this paper provides a critical assessment of its fortunes since that time. Having 'rescued' the concept from recent postmodern and disability critiques, the paper provides a series of further reflections on its strengths and weaknesses, including the notion of 'normal illness'; the importance of timing and context; the significance of continuity as well as loss; and the role of biographical disruption itself in the aetiology of illness. This, in turn, provides the basis for a broader set of reflections on the vicissitudes of the biographically embodied self in conditions of late modernity: a situation of chronic reflexivity in which our bodies/selves are continually problematised if not pathologised. The paper concludes, given this 'balance sheet', with a discussion of some potentially fruitful lines of future research, including links with the life-events and inequalities literature. [ABSTRACT FROM AUTHOR]
- Published
- 2000
- Full Text
- View/download PDF
11. Time to manage: patient strategies for coping with an absence of care coordination and continuity.
- Author
-
Jowsey, Tanisha, Dennis, Simone, Yen, Laurann, Mofizul Islam, M., Parkinson, Anne, and Dawda, Paresh
- Subjects
PSYCHOLOGICAL adaptation ,CHRONIC diseases ,CONTINUUM of care ,FIELDWORK (Educational method) ,HEART failure ,INTERVIEWING ,OBSTRUCTIVE lung diseases ,RESEARCH methodology ,TYPE 2 diabetes ,PARTICIPANT observation ,SENSORY perception ,HEALTH self-care ,TIME ,ETHNOLOGY research ,QUALITATIVE research ,JUDGMENT sampling ,SECONDARY analysis ,THEMATIC analysis ,DATA analysis software - Abstract
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]
- Published
- 2016
- Full Text
- View/download PDF
12. 'Sick role' or 'empowerment'? The ambiguities of life with an HIV positive diagnosis.
- Author
-
Crossley, Michele
- Subjects
HIV-positive persons ,PSYCHOLOGY of the sick ,CHRONIC diseases ,DIAGNOSIS ,HIV infections - Abstract
This paper addresses the relevance of Parsons' concept of the 'sick role' to the experience of illness in contemporary society by building on recent research, which suggests that the increasing predominance of chronic disease changes the temporal structure of the experience of illness. This has important implications for the structure of social expectations and obligations associated with the 'sick role'. In particular, recent advocates of 'insider' views of illness and the related promotion of ideologies of 'patient empowerment' have contested assumptions of dependency implicit within the concept of the 'sick role', presenting a far more 'independent' and 'proactive' vision of the sick individual. With specific application to a group of people living relatively long term with an HIV positive diagnosis, this paper addresses some of the implicit ambiguities manifest in the self-empowerment ethos, highlighting some implicit dependencies underlying the rhetoric of empowerment and concluding that a more structural analysis of illness experiences, such as that proposed by Parsons, may be apposite. [ABSTRACT FROM AUTHOR]
- Published
- 1998
- Full Text
- View/download PDF
13. Reframing health and illness: a collaborative autoethnography on the experience of health and illness transformations in the life course.
- Author
-
Nowakowski, Alexandra C.H. and Sumerau, J.E.
- Subjects
CHRONIC diseases ,CYSTIC fibrosis ,INDIVIDUALITY ,MATHEMATICAL models ,CASE studies ,EVALUATION of medical care ,PSYCHOLOGY of the sick ,SOCIAL skills ,ETHNOLOGY research ,DISEASE management ,THEORY ,EMPIRICAL research ,NARRATIVES ,ATTITUDES toward illness - Abstract
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]
- Published
- 2019
- Full Text
- View/download PDF
14. Myalgic Encephalomyelitis and the medical encounter.
- Author
-
Cooper, Lesley
- Subjects
NEUROMUSCULAR diseases ,CHRONIC fatigue syndrome ,CHRONIC diseases ,MEDICINE ,ETIOLOGY of diseases - Abstract
In the history of twentieth century western medicine several 'syndromes' have been denied the legitimate status of 'organic disease'. Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are examples of such syndromes, in that their status within biomedicine as 'real, organic' diseases is still a matter of controversy. These 'non-diseases' or 'illegitimate illnesses' are usually defined in terms of symptoms, with few consistent signs, and scientists and doctors have failed to agree on aetiology and pathogenesis. There are no obvious visible abnormalities present in sufferers, and ME cannot be diagnosed by standard medical tests. This paper explores the consequences of uncertainty and controversy for those who suffer from ME. It is based primarily on a series of ten life history interviews with sufferers of ME. These accounts of illness careers focus on the difficulties in obtaining a correct diagnosis and achieving legitimate sick role status, and on problems of miscommunication, dismissal and disbelief. As a result, respondents changed their attitudes towards either particular doctors, or the medical profession. These altered perceptions are discussed in the context of the emergence of critical lay perspectives, and a growing public ambivalence towards biomedicine. [ABSTRACT FROM AUTHOR]
- Published
- 1997
- Full Text
- View/download PDF
15. The sociology of chronic illness: a review of research and prospects.
- Author
-
Bury, Michael
- Subjects
CHRONIC diseases ,SOCIAL medicine ,SOCIAL science methodology ,ADAPTABILITY (Personality) ,STRATEGIC planning ,EMPIRICAL research - Abstract
This paper provides a review of research and debate in the field of chronic illness. It first outlines some general features of a sociological approach, and then goes on to use recent empirical studies of chronic illness to illustrate some of the main stages involved. These include: onset and the problems of explanation and legitimation, the impact of treatment, and the development of adaptive responses. An attempt is made to distinguish the use of the terms 'coping,' 'strategy' and 'style' in describing adaptation. The paper argues that a sociological approach needs to recognize the positive actions people take, as well as the problems they face. In this way, diversity in managing chronic illness, and the continuing need for a person-based approach to sociological work, are underlined. [ABSTRACT FROM AUTHOR]
- Published
- 1991
- Full Text
- View/download PDF
16. Style, discourse and constraint in adjustment to chronic illness.
- Author
-
Radley, Alan
- Subjects
CHRONIC diseases ,DISEASES ,CULTURE ,PATIENTS ,SYMPTOMS ,DISCOURSE - Abstract
This paper discusses the problem of adjustment to chronic illness in terms of the demands of the patient's body and the constraints of culture. Criticism is offered of explanations which reduce such adjustment to a form of functional adaptation, either to symptoms or to social expectations taken separately. The argument is made that social constraints are embodied in everyday conduct, while bodily changes are made sensible through meanings engendered within discourse. Utilising findings from a study of coronary patients and their spouses the paper describes differences between the situations of those who confront and oppose illness and those who modify their lives as they accommodate to it. A discussion is offered of the different transformations of illness experience as these relate to the role-settings of those concerned. This is used to set out a general thesis on style as a contextualisation of iilnessexperience, articulated in the co-ordination of bodily action and social categories. [ABSTRACT FROM AUTHOR]
- Published
- 1989
- Full Text
- View/download PDF
17. Between disruption and continuity: challenges in maintaining the 'biographical we' when caring for a partner with a severe, chronic illness.
- Author
-
Aasbø, Gunvor, Solbrække, Kari Nyheim, Kristvik, Ellen, and Werner, Anne
- Subjects
OBSTRUCTIVE lung disease treatment ,CAREGIVERS ,CHRONIC diseases ,FAMILIES ,INTERVIEWING ,OBSTRUCTIVE lung diseases ,MEDICAL care ,PATIENTS ,QUALITY of life ,SOCIOLOGY ,SPOUSES ,QUALITATIVE research ,HUMAN research subjects ,PATIENT selection ,DISEASE complications - Abstract
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]
- Published
- 2016
- Full Text
- View/download PDF
18. Biographical disruption, abruption and repair in the context of Motor Neurone Disease.
- Author
-
Locock, Louise, Ziebland, Sue, and Dumelow, Carol
- Subjects
TERMINALLY ill ,MOTOR neuron diseases ,NEUROMUSCULAR diseases ,AMYOTROPHIC lateral sclerosis ,CHRONIC diseases ,FAMILIES of the terminally ill ,INCURABLE diseases ,LIFE change events & psychology ,PSYCHOLOGICAL stress ,PSYCHOLOGY of the sick ,PATIENTS - Abstract
Concepts of biographical disruption and repair have been widely applied to chronic illness, but not terminal illness. This paper examines the relevance of these concepts to motor neurone disease (MND), a progressive neurological condition characterised by loss of mobility, speech and ability to breathe or swallow. Survival is usually between two and five years, and some die within a few months. The condition thus lies at the boundary between chronic and terminal illness. Narrative interviews were conducted with 35 people living with MND and 11 family carers; analysis explored how people constructed their accounts as well as what they said. As well as accounts of biographical disruption, we identified a distinctive sense that the diagnosis is a ‘death sentence’ and life is already over, which we term ‘biographical abruption’. We also found instances of biographical repair, as participants sought to make sense of their remaining life, restore normality and control, and find new meaning and identity. [ABSTRACT FROM AUTHOR]
- Published
- 2009
- Full Text
- View/download PDF
19. ‘Pressure of life’: ethnicity as a mediating factor in mid-life and older peoples’ experience of high blood pressure.
- Author
-
Higginbottom, Gina Marie Awoko
- Subjects
SOCIAL medicine ,HYPERTENSION ,PATIENTS ,CARIBBEAN people ,HEALTH & race ,CHRONIC diseases ,CARDIOVASCULAR diseases ,MINORITIES ,DISEASES - Abstract
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]
- Published
- 2006
- Full Text
- View/download PDF
20. Framing the doctor-patient relationship in chronic illness: a comparative study of general practitioners’ accounts.
- Author
-
May, Carl, Allison, Gayle, Chapple, Alison, Chew‐Graham, Carolyn, Dixon, Clare, Gask, Linda, Graham, Ruth, Rogers, Anne, and Roland, Martin
- Subjects
CHRONIC diseases ,MEDICAL care ,BACKACHE ,MENORRHAGIA ,MENTAL depression ,BACK diseases - Abstract
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]
- Published
- 2004
- Full Text
- View/download PDF
21. Understanding the routinised inclusion of race, socioeconomic status and sex in epidemiology: the utility of concepts from technoscience studies.
- Author
-
Shim, Janet K.
- Subjects
EPIDEMIOLOGY ,MEDICAL anthropology ,ETIOLOGY of diseases ,PUBLIC health ,SOCIAL classes ,CHRONIC diseases ,ETHNOLOGY - Abstract
The multifactorial model of disease causation constitutes the dominant conceptual framework underwriting the epidemiology of chronic illness. Under this rubric, factors correlated with disease are analysed at the individual level; accordingly, race, social class and gender are routinely conceptualised and incorporated into epidemiological research as individualised measures of racial category, socioeconomic status and sex. This paper employs three concepts from the field of technoscience studies to elucidate how epidemiological constructions about bodily ‘differences’ are infused with authority and legitimacy. The multifactorial model and accompanying representations of race, class and gender can be usefully conceptualised as a black box (Latour 1987, Latour and Woolgar 1986), in which individualised inputs to epidemiological studies are routinised while the interior workings of the black box - how exactly ‘differences’ come to affect health - are taken for granted. Second, processes of triangulation (Star 1985, 1986) are evident, as results from multiple lines of research on an array of different diseases are used to enhance the stability of the multifactorial model and associated constructions of ’difference’. A final illuminating technoscience concept is that of the boundary object (Star and Griesemer 1989), whose dual properties of conceptual flexibility and integrity help in understanding the proliferation and institutionalisation of epidemiological methods of studying race, class and sex/gender in chronic disease. [ABSTRACT FROM AUTHOR]
- Published
- 2002
- Full Text
- View/download PDF
22. Is anybody there? Critical realism, chronic illness and the disability debate.
- Author
-
Williams, Simon J.
- Subjects
REALISM ,CHRONIC diseases ,DISABILITIES ,SOCIOLOGY ,PAIN ,DISEASES - Abstract
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]
- Published
- 1999
- Full Text
- View/download PDF
23. Fear and loathing in health care settings reported by people with HIV.
- Author
-
Green, Gill and Platt, Stephen
- Subjects
AIDS ,CHRONIC diseases ,HIV infections ,MEDICAL care ,SOCIAL medicine ,PUBLIC health - Abstract
People with chronic or terminal diseases not only have to face the biophysical consequences but also the social impact of illness. The social impact or stigma associated with HIV/AIDS is high due to its infectivity and association with deviant behaviour. Social interaction with health professionals is critical for subsequent social adjustment to possession of a discreditable disease, including HIV. This paper examines the subjective reports of 61 people with HIV within this context and identifies processes of stigmatisation in health care settings. In agreement with surveys of health care workers, fear of contagion is identified as the principal source of negative reactions towards people with HIV in health care settings. Issues of confidentiality and the response of people with HIV to stigma in health care settings are also discussed. It is concluded that, although the biomedical model in which health professionals are trained ignores the social impact of disease, HIV-related stigma in health care settings in Scotland is declining as health professionals become familiar with treating people with HIV. [ABSTRACT FROM AUTHOR]
- Published
- 1997
- Full Text
- View/download PDF
24. Medical sociology, chronic illness and the body: a rejoinder to Michael Kelly and David Field.
- Author
-
Williams, Simon J.
- Subjects
LIFE sciences ,SOCIAL medicine ,CHRONIC diseases ,MIND & body ,SOCIOLOGISTS - Abstract
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.
- Published
- 1996
- Full Text
- View/download PDF
25. Medicalisation reconsidered: toward a collaborative approach to care.
- Author
-
Broom, Dorothy H. and Woodward, Roslyn V.
- Subjects
SOCIAL medicine ,MEDICALIZATION ,CHRONIC fatigue syndrome ,CHRONIC diseases ,DIAGNOSIS ,SOCIAL psychology - Abstract
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]
- Published
- 1996
- Full Text
- View/download PDF
26. Medical sociology, chronic illness and the body.
- Author
-
Kelly, Michael P. and Field, David
- Subjects
SOCIAL medicine ,CHRONIC diseases ,MIND & body ,CONSCIOUSNESS ,SOCIOLOGY ,PERSONS - Abstract
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]
- Published
- 1996
- Full Text
- View/download PDF
27. Ideology in the clinical context: chronic illness, ethnicity and the discourse on normalisation.
- Author
-
Anderton, Joan M., Elfert, Helen, and La, Magdalene
- Subjects
CHRONIC diseases ,IDEOLOGY ,ETHNICITY ,DISCOURSE ,MEDICAL care - Abstract
This paper is based on a comparative study examining how Chinese and white families manage the care of a chronically ill child. The circumstances of their lives that shape their experience of iliness are explored. It is argued that the ideologies which underpin Western health cate practices, in this case, the 'ideology of normalisation', often differ from the perspectives held by non-Western immigrants, and others who do not have access to the ideology. The discrepancies in viewpoints between patients and practitioners can lead to a different set of goals in the treatment encounter, with the possibility of misunderstandings in the clinical context. The 'ideology of normalisation' is used to show how professional ideologies serve as a means of separating out families into those who comply and those who do not. In other words, the ideology, and the moral discourse on normalisation, permit professionals to evaluate families and to categorise them. This categorisation has consequences for patient care, they might be refused treatment. Yet, this ideology is not based merely on 'value-free professional theories', but is located within the moral order. The socio-political, economic and historical factors that underpin the ideology are discussed. [ABSTRACT FROM AUTHOR]
- Published
- 1989
- Full Text
- View/download PDF
28. Making sense: further studies of living with chronic illness.
- Author
-
Williams, Gareth H. and Jones, Ian Rees
- Subjects
CELEBRITIES ,CHRONIC diseases ,SERIAL publications ,SOCIOLOGY - Abstract
An introduction to a series of articles featured in the issue is presented on topics including the strength of the concept of biographical disruption through the narrative experiences of two young adults with inflammatory bowel disease (IBD), how insomnia illness experience can be conceptualised as biographical disruption, and the lived experiences of people with Meniere's disease.
- Published
- 2017
- Full Text
- View/download PDF
29. Why doesn't integrated care work? Using Strong Structuration Theory to explain the limitations of an English case.
- Author
-
Hughes, Gemma, Shaw, Sara E., and Greenhalgh, Trisha
- Subjects
CONFIDENCE intervals ,CHRONIC diseases ,COST control ,PATIENTS ,UNNECESSARY surgery ,PATIENTS' attitudes ,HOSPITAL admission & discharge ,AGING ,CASE studies ,DESCRIPTIVE statistics ,INTERPROFESSIONAL relations ,INTEGRATED health care delivery - Abstract
Integrated care is an aim and a method for organising health and care services, particularly for older people and those with chronic conditions. Policy expects that integrated care programmes will provide person‐centred coordinated care which will improve patient or client experience, enable population health, prevent hospital admissions and thereby reduce costs. However, empirical evaluations of integrated care interventions have shown disappointing results. We analysed an in‐depth case study using Strong Structuration Theory to ask: how and why have efforts to integrate health and social care failed to produce desired outcomes? In our case, integrated case management and the creation of cost‐saving plans were dominant practices. People working in health and social care recursively produced a structure of integrated care: a recognised set of resources created by collective activities. Integrated care, intended to help patients manage their long‐term conditions and avoid hospital admission, was only a small part of the complex network that sustained patients at home. The structures of integrated care were unable to compensate for changes in patients' health. The result was that patients' experiences remained largely unaffected and hospital admissions were not easily avoided. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
30. Living with chronic illness in the family setting.
- Author
-
Gregory S
- Subjects
- *
FAMILIES , *FAMILY relations , *DIET in disease , *CORONARY disease , *CELIAC disease , *CHRONIC diseases - Abstract
This paper discusses the ways in which family practices and family relationships interact with the demands of diet-related chronic illness. It uses a study that examined the management of food and diet in families where one member had been diagnosed with one of two medical conditions: coronary heart disease (CHD) and coeliac disease (CD). The data revealed a propensity for family members, especially female partners/wives, to see the tasks and activities related to the special diet in terms of family practices rather than individual (patients') responsibilities. These family practices could be seen to be gendered but also part of the ongoing lived experience of the family relationship. It is speculated that this is part of a desire for what Giddens has described as 'ontological security'. Thus, the special diet tends to be assimilated into family practices in ways that promote a sense of continuity that is described as 'normality' or 'leading a normal life'. [ABSTRACT FROM AUTHOR]
- Published
- 2005
- Full Text
- View/download PDF
31. Sick but healthy: bariatric patients and the social construction of illness and disability.
- Author
-
Stevens, Corey
- Subjects
OBESITY & psychology ,CHRONIC diseases ,DIETARY supplements ,DIGESTIVE organs ,HEALTH status indicators ,INTERVIEWING ,BARIATRIC surgery ,OVERWEIGHT persons ,PEOPLE with disabilities ,SOCIAL stigma ,WEIGHT loss ,SOCIAL constructionism ,REHABILITATION - Abstract
Bariatric (weight loss) surgery modifies the digestive system, which produces impairments and symptoms which might be considered illness or disability. Bariatric patients, however, do not view themselves as ill or disabled, but healthier than before surgery. For this study, 35 bariatric patients – from a clinic located in the Midwestern United States – were interviewed to investigate how moral and medical discourses surrounding obesity impact how patients experience their bodies after bariatric surgery. While previous literature on bariatric patients has explored discourses of medicine, stigma and discipline, fewer have analysed how patients interpret physiological symptoms. Patients often reduce or discontinue medications for chronic illness after bariatric surgery, then replace them with a strict regimen of dietary supplements. Even though these supplements are taken to manage an impaired digestive system, they do not carry the same moral weight as medications for chronic illness. Patients also experience painful and humiliating symptoms after bariatric surgery. Bariatric patients interpret symptoms not as illness, but as important disciplinary tools to lose weight. These findings have implications for the social construction and experience of illness and disability in the context of fat stigma, health morality and biomedicalisation. [ABSTRACT FROM AUTHOR]
- Published
- 2020
- Full Text
- View/download PDF
32. Thinking with care infrastructures: people, devices and the home in home blood pressure monitoring.
- Author
-
Weiner, Kate and Will, Catherine
- Subjects
BLOOD pressure measurement ,CHRONIC diseases ,INTERVIEWING ,HEALTH self-care ,EQUIPMENT & supplies - Abstract
Abstract: The growing consumer market in health monitoring devices means that technologies that were once the preserve of the clinic are moving into spaces such as homes and workplaces. We consider how one such device, blood pressure monitors, comes to be integrated into everyday life. We pursue the concept of ‘care infrastructure’, drawing on recent scholarship in STS and medical sociology, to illuminate the work and range of people, things and spaces involved in self‐monitoring. Drawing on a UK study involving observations and interviews with 31 people who have used a consumer blood pressure monitor, we apply the concept beyond chronic illness, to practices involving consumer devices – and develop a critical account of its value. We conclude that the care infrastructure concept is useful to highlight the socio‐material arrangements involved in self‐monitoring, showing that even for ostensibly personal devices, monitoring may be a shared practice that expresses care for self and for others. The concept also helps draw attention to links between different objects and spaces that are integral to the practice, beyond the device alone. Care infrastructure draws attention to the material, but ensures that analytic attention engages with both material and social elements of practice and their connections. [ABSTRACT FROM AUTHOR]
- Published
- 2018
- Full Text
- View/download PDF
33. Women's experience of HIV as a chronic illness in South Africa: hard-earned lives, biographical disruption and moral career.
- Author
-
Wouters, Edwin and De Wet, Katinka
- Subjects
HIV infections & psychology ,ANTIVIRAL agents ,BODY image ,CHRONIC diseases ,CONTENT analysis ,DRUGS ,EXPERIENCE ,GROUNDED theory ,HIV-positive persons ,INTERVIEWING ,LONGITUDINAL method ,RESEARCH methodology ,PATIENT compliance ,RESEARCH funding ,STATISTICAL sampling ,SOCIAL stigma ,INTER-observer reliability ,PATIENTS' attitudes ,ATTITUDES toward illness - Abstract
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]
- Published
- 2016
- Full Text
- View/download PDF
34. Changing social and scientific discourses on type 2 diabetes between 1800 and 1950: a socio-historical analysis.
- Author
-
O'Donnell, Shane
- Subjects
TYPE 2 diabetes & psychology ,CHRONIC diseases ,CULTURE ,DISCOURSE analysis ,TYPE 2 diabetes ,RESEARCH funding ,SOCIAL classes ,SOCIOLOGY ,LIFESTYLES ,HEALTH equity - Published
- 2015
- Full Text
- View/download PDF
35. Unstable terminality: negotiating the meaning of chronicity and terminality in motor neurone disease.
- Author
-
Vigeland Lerum, Sverre, Nyheim Solbrække, Kari, Holmøy, Trygve, and Frich, Jan C.
- Subjects
AMYOTROPHIC lateral sclerosis ,CHRONIC diseases ,INTERVIEWING ,MOTOR neuron diseases ,QUALITATIVE research ,DATA analysis software ,DESCRIPTIVE statistics ,PROGNOSIS - Published
- 2015
- Full Text
- View/download PDF
36. Developing biographies: the experiences of children, young people and their parents of living with a long-term condition.
- Author
-
Bray, Lucy, Kirk, Sue, and Callery, Peter
- Subjects
BIOGRAPHY (Literary form) ,CHRONIC diseases ,DRAWING ,GROUNDED theory ,INTERVIEWING ,RESEARCH methodology ,QUALITATIVE research ,DATA analysis ,REFLEXIVITY ,FAMILY attitudes - Published
- 2014
- Full Text
- View/download PDF
37. Say 'trouble's gone': chronic illness and employability in job training programmes.
- Author
-
Tsui, Emma K.
- Subjects
CHRONIC diseases & psychology ,CHRONIC diseases ,DISCOURSE analysis ,EMPLOYMENT ,INTERVIEWING ,PERSONNEL management ,ETHNOLOGY research ,FIELD research ,DISEASE complications - Published
- 2013
- Full Text
- View/download PDF
38. Illness in the context of older age: the case of stroke.
- Author
-
Pound, Pandora, Gompertz, Patrick, and Ebrahim, Shah
- Subjects
CEREBROVASCULAR disease ,OLD age ,CHRONIC diseases ,AGE factors in disease ,WORKING class ,SOCIOLOGY literature - Abstract
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]
- Published
- 1998
- Full Text
- View/download PDF
Discovery Service for Jio Institute Digital Library
For full access to our library's resources, please sign in.