The illness experience: state of knowledge and perspectives for research

Abstract Over the last quarter of a century, research on the illness experience has thrived. Publications on this subject are reviewed in relation to three themes: subjectivity; coping actions and strategies for managing everyday life; and the social structure. Sociology of Health and Illness has contributed significantly to this field. In conclusion, research perspectives are suggested for tackling the problems in passing from a micro to a macro level of analysis.     

The sociology of chronic illness: a review of research and prospects

This paper provides a review of research and debate in the held 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 recognise the positive actions people take, as well as the problems they face. In this way, diversity in managing chrome illness, and the continuing need for a person-based approach to sociological work, are underlined     

Women's perspectives on chronic illness: ethnicity, ideology and restructuring of life

This inquiry into the lives of women living with a chronic illness brings to attention the complex processes that frame the existential meanings of illness. Data from immigrant Chinese and Anglo-Canadian women with diabetes are used to show that illness is constructed in a complex social, political and economic nexus. When the circumstances of women's lives are examined, styles of managing illness that could be attributed to ethnicity, become recognizable as pragmatic ways of dealing with the harsh realities of material existence. It is argued that the trends toward individualizing social problems, and shifting the responsibility for caretaking from the state to the individual, obfuscate the social context of illness, and exclude the socially disadvantaged from adequate health care.     

MicroRNA在心律失常研究中的进展及其应用前景

心律失常与多种心血管疾病的发生发展有关,并与心源性猝死密切相关。研究心律失常的分子机制及其可能的治疗手段具有重要意义。microRNA与心脏多种离子通道蛋白表达以及心律失常的发生有紧密关系。同时,microRNA干扰技术的发展和应用为心律失常的生物或基因治疗奠定了基础。     

Conceptualizing autonomy in the context of chronic physical illness: relating philosophical theories to social scientific perspectives

The aim of this article is to conceptualize autonomy in the context of chronic physical illness. To this end, we compare and contrast a selection of contemporary philosophical theories of autonomy with social scientific perspectives on chronic illness, particularly models of disability and symbolic interactionism. The philosophical theories mainly depart from a positive conceptualization of autonomy, which involves actively shaping one's life and identifying with fundamental values. This conceptualization is preferred over a negative conceptualization, which defines autonomy as non-interference, for its compatibility with social models of disability and with the assumption that people are interdependent. Interference may disable, but also enable people with a chronic illness to shape their lives. What matters is that people can realize what they want to realize. We suggest that, in the context of chronic physical illness, autonomy might be conceptualized as correspondence between what people want their lives to be like and what their lives are actually like. Disturbed autonomy might be restored either by expanding opportunities to arrange life or by adjusting how one wants life to be arranged. The grounds for the latter approach might be questioned, first, if people have not adjusted what they want carefully, and second, if reorganization of the material and social environment would have made it unnecessary to adjust one's arrangement of life.     

Use of the genealogical method in the exploration of chronic illness: a research note

This paper briefly describes how the genealogical method, as derived from Foucault's work, might be used to explore the problem of chronic illness. The genealogical method is differentiated from other qualitative methods, from epidemiology, and from the history of ideas. Finally, the particular relationship, within the genealogical method, of method itself and its object of study is outlined.     

Interactive health communication applications for chronic disease: patient and carer perspectives

Interactive health communication applications (IHCAs) may be particularly useful to patients and carers managing chronic disease. We have run eight focus groups with patients and two with carers involving a total of 40 participants. The focus groups were designed to seek patients' and carers' requirements of IHCAs and to identify the criteria they would use to assess them. Analysis revealed that many participants saw the value and potential of IHCAs. Even those with modest previous computer experience could use them with little tuition. The findings from this study have policy implications for the development of applications to maximize the potential benefit of IHCAs to patients and carers.     

The genesis of chronic illness: narrative re-construction

In this paper I demonstrate the way in which people's beliefs about the aetiology of their particular affliction (arthritis) need to be understood as part of a more comprehensive imaginative enterprise which I refer to as narrative reconstruction. The intrinsically teleological form of this enterprise means that identified ‘causes’ represent r only putative efficient connexions between the disease and antecedent factors but also narrative reference points between the individual and society in an unfolding process which has become profoundly disrupted. Through the presentation of case material taken from lengthy interviews I illustrate the way in which my question to the subjects about the cause of their disease: ‘Why do you think you got arthritis?’ was translated by them into a narrative reconstruction of their changing relationship to the world in which they live and the genesis of illness within it.     

An uncertain revolution: why the rise of a genetic model of mental illness has not increased tolerance

This study uses the 2006 replication of the 1996 General Social Survey Mental Health Module to explore trends in public beliefs about mental illness in the USA. Drawing on three models related to the framing of genetic arguments in popular media, the study attempts to address why tolerance of the mentally ill has not increased, despite the growing popularity of a biomedical view. The key to resolving this paradox lies in understanding how genetic arguments interact with other beliefs about mental illness, as well as the complex ideational implications of genetic frameworks. Genetic arguments have contingent relationships with tolerance. When applied to schizophrenia, genetic arguments are positively associated with fears regarding violence. Indeed, in this regard, attributing schizophrenia to genes is no different from attributing schizophrenia to bad character. However, when applied to depression, genetic arguments are positively associated with social acceptance. In addition to these contingencies, genetic explanations have discontinuous relationships with beliefs regarding treatment. Although genetic arguments are positively associated with recommending medical treatment, they are not associated with the perceived likelihood of improvement. The net result of these assorted relationships is little change in overall levels of tolerance over time. Because of the blunt nature of the forces propelling a biomedical view-including the growing popularity of psychiatric medications-altering beliefs about the etiology of mental illness is unlikely, on its own, to increase tolerance.     

The influence of social support on chronic illness self-management: a review and directions for research.

A review of the empirical literature examining the relationship between social support and chronic illness self-management identified 29 articles, of which 22 were quantitative and 7 were qualitative. The majority of research in this area concerns diabetes self-management, with a few studies examining asthma, heart disease, and epilepsy management. Taken together, these studies provide evidence for a modest positive relationship between social support and chronic illness self-management, especially for diabetes. Dietary behavior appears to be particularly susceptible to social influences. In addition, social network members have potentially important negative influences on self-management There is a need to elucidate the underlying mechanisms by which support influences self-management and to examine whether this relationship varies by illness, type of support, and behavior. There is also a need to understand how the social environment may influence self-management in ways other than the provision of social support     

Adapting the chronic care model to treat chronic illness at a free medical clinic

This pilot project was designed to determine the feasibility and effectiveness of an adaptation of the chronic care model applied to uninsured patients in a free medical clinic staffed by volunteer physicians. Of the 149 enrolled patients, 117 had hypertension, 91 had diabetes, and 51 had hyperlipidemia. Patients were enrolled in a chronic disease registry from March 1, 2001 through September 30, 2002 at the Salvation Army Free Clinic (SAFC). Two part-time registered nurses served as care managers providing disease-specific management using evidence-based guidelines. Consistent specialty consultation was available via phone, e-mail, or physician visit. Patient self-management was encouraged through collaborative goal setting. There were 40 patients lost to follow-up; 109 completed the study. A clinically significant improvement was obtained in at least one chronic disease for 79 patients. The chronic care model was a useful template for the delivery of effective chronic disease care to a group of uninsured patients at a free medical clinic.     

The family's functioning with chronic illness in the mother: the spouse's perspective

While previous research has studied the impact of chronic illness on the patient or spouse, the impact on the marriage, the child, the parent-child relationship, and the family's functioning have been relatively ignored. To date ther is no known study of the impact of a mother's chronic illness on the family. The purpose of the current exploratory study was to test a set of interrelated hypotheses about family functioning with the mother's chronic illness from the spouse's perspective based on a family systems perspective. Data were obtained from standardized questionnaires from 48 fathers with young school-age children whose wife had either breast cancer, diabetes, or fibrocystic breast disease. Results of a path analysis revealed that the number of illness demands the father experienced was a significant predictor of his level of depression. More demands resulted in higher depression scores. Marital adjustment was significantly affected by both the father's level of depression as well as by his wife's type of disease. Spouses of women with breast cancer had significantly higher levels of marital adjustment than did partners of the other women. More depressed spouses had lower levels of marital adjustment. Both illness demands and level of marital adjustment significantly predicted the type of coping behavior the family used. More frequent illness demands and higher levels of marital adjustment were associated with familial introspection, that is, coping behavior characterized by frequent feedback, reflection, and discussion in the family. The quality of the father-child relationship was significantly affected by this type of coping behavior. Families characterized as introspective had fathers who reported more frequent interchange with their children.(ABSTRACT TRUNCATED AT 250 WORDS)     

Qualitative research on chronic illness: a commentary on method and conceptual development

This concluding essay discusses some crucial methodological issues raised by other papers in this issue. It also suggests directions for further conceptual development concerning the qualitative research on chronic illness.     

An application of the transactional model to the analysis of chronic illness narratives

The authors' aim in this study was to describe the chronic illness experience and its relationship to the concept to finding meaning. They conducted interviews using a narrative approach with 15 adults experiencing various chronic illnesses and analyzed narrative data using a combination of holistic-content and categorical-content approaches. The three major categories were the context of the chronic illness experience, personal reactions, and coping efforts. These categories were best interpreted in terms of a transactional model. The authors categorized finding meaning under cognitive coping strategies and described it as a strategy that was part of a larger coping repertoire.