Shifting normalities: interactions of changing conceptions of a normal life and the normalisation of symptoms in rheumatoid arthritis

Biographical disruption and related concepts have been widely applied in chronic illness. Different conceptualisations of normalisation have also been proposed in order to explain individuals' diverse responses to illness on their biography, but as yet, not clearly related to changing bodily experience or normalisation of symptoms. This article aims to examine the relevance of these concepts in rheumatoid arthritis (RA), an unpredictable autoinflammatory disease characterised by painful and swollen joints, disability, fatigue and joint damage. Interviews were conducted with 23 people living with RA, and analysed using Framework, to enable people's whole narratives and context to be considered. Six typologies of normality emerged from the data: disrupted; struggling to maintain; fluctuating; resetting; returning; and continuing normality. Multiple normalities were often present in individuals' narratives, with one normality typology usually dominating at the time of the interview. The typologies connect to several biographical concepts, and instances of 'biographical reinstatement' were also found, where participants described returning to normal life, through perceived effective medication rather than reconceptualisation of health. The concept of 'shifting normalities' is proposed, providing a dynamic explanatory model of chronic illness that captures the interaction of changing conceptions of a normal life and the normalisation of symptoms.     

Video intervention/prevention assessment: a patient-centered methodology for understanding the adolescent illness experience.

OBJECTIVE: To better understand the issues and needs of adolescents with chronic health conditions, the Video Intervention/Prevention Assessment (VIA) integrates video technology with qualitative research methods to obtain a patient-centered perspective on illness and health care. METHODS: Young people with chronic disease are interviewed for condition-specific verbal reports (CSVRs) of their medical and psychosocial histories. Standardized health-related quality of life (HRQL) instruments are administered. Trained to use video camcorders, participants record visual narratives of their illness experiences. They document their daily lives, interview families and friends, and record personal monologues regarding their observations, behaviors, understandings, and beliefs about their disease. On completion of the visual narratives, HRQL is again evaluated. Verbal, scaled, and visual data are analyzed from three perspectives: medical, psychosocial, and anthropological. Data from the CSVRs, HRQLs, and visual narratives are triangulated to validate and enrich findings. RESULTS: Investigating the illness experience from the adolescent patient's perspective, the VIA method was pilot-tested with children and adolescents with asthma. As a research tool, VIA found environmental risk factors, medication adherence problems, and outcome-affecting illness beliefs and psychological states that were not identified by standard clinical tools. As an intervention, VIA showed that it may be an effective tool for health-related environmental surveys. Participants' condition-specific quality of life showed measurable improvement after the self-examination process of VIA. As communication, VIA made apparently counterproductive patient behaviors understandable by showing them in context with the adolescent's experience of illness and health care. VIA can enhance medical history-taking and management strategies, improve adolescents' self-management skills, and educate clinicians, families, and students of the health care professions about the realities of the adolescent living with a chronic health condition.     

The koala has claws: applications of the shifting perspectives model in research of chronic illness

The Shifting Perspectives Model of Chronic Illness was recently developed in the metasynthesis of more than 250 qualitative research reports about chronic illness. The model proposes that people with chronic illness view living with their disease in accordance with how much wellness or illness is in the foreground of their experience. It also identifies a number of circumstances and situations that can prompt a shift from wellness or illness in the foreground to wellness or illness in the background. One such situation is being interviewed or observed as a participant in research about the experience of living with a chronic disease. The author reviews the model, providing excerpts from an interview with a key informant with a chronic illness to substantiate the model and to identify a number of implications of the model for researchers. She highlights some of the difficulties and limitations encountered when researchers attempt to define the experience of living with chronic illness through the lens of a single perspective.     

The parent they knew and the "new" parent: daughters' perceptions of dementia of the Alzheimer's Type

Psychosocial death is a significant dimension of the Dementia of the Alzheimer's Type disease process but poorly studied. This article explores three phases of psychosocial death that emerged from in-depth interviews with three daughters caring for a parent with this chronic illness. The phases discussed include: (1) daughters creating a new relationship with their parent; (2) daughters grieving chronically throughout the illness; (3) daughters negotiating coherence between the parent that once was and the parent that exists now. Daughters' narratives reveal that witnessing the deterioration of a mind was a burdensome grave learning process that encompassed many losses. These daughters lacked appropriate education and support. Future research in this area is required to develop strategies for informal caregivers that respond to this disease process.     

Negotiating the contested terrain of narrative methods in illness contexts

This paper offers an interpretive account of an ongoing transatlantic debate about illness narratives instigated by the publication in 1997 of Paul Atkinson’s paper Narrative Turn Or Blind Alley? The claims and counter‐claims to be found in this debate about narrative data and narrative analysis are set out sequentially, in an attempt to grasp the debate’s essentials. Matters of theoretical perspective, methodology, ethics, and personal politics are found to be at stake in the writings of the four featured academics: Paul Atkinson, Arthur Bochner, Arthur Frank and Elliot Mishler. The paper moves on to consider the types of sociologies at work in their arguments, and explores the debate’s implications for the author’s own illness narratives research project. The paper’s overall aim is to assist researchers who seek to clarify their own thinking on the use of narrative research methods in illness contexts.     

Illness and narrative

Abstract The article gives a review of the last ten years' of research on illness narratives, and organises this research around certain central themes. Four aspects of illness narratives are discussed: 1. a proposed typology giving three different kinds of illness narratives - illness as narrative, narrative about illness, and narrative as illness; 2. considerations of what can be accomplished with the help of illness narratives; 3. problems connected with how illness narratives are organised; and 4. the social context of telling and its influence on the narrative. It is argued that as social scientists we can use illness narratives as a means of studying not only the world of biomedical reality, but also the illness experience and its social and cultural underpinnings.     

上海医疗保险中"特殊人群"医疗问题的分析与建议

作分别对低收入人群、慢性病患、老年人群、国家机关和事业单位工作人员、高校教授等“特殊人群”支付医疗费用的情况进行了简要分析,并分别提出了建议。     

The mundane ailment and the physical self: analysis of the social psychology of health and illness

Using interview data from adult men and women who participated in an ongoing study of self-care, the research focused on the experience of mundane ailments as a promising topic for research in the social psychology of health and illness. Phenomenological analysis of respondents' accounts of everyday ailments generated concepts of 'the physical self', which expands interactive or dramaturgical concepts, and 'the health biography'. These concepts, when linked to analysis of interaction lead to a more dynamic sociology of health, illness, care and cure.     

Cultural influences on the use of social support by Chinese immigrants in Japan: "face" as a keyword

In this study, the author demonstrates that cultural differences between China and Japan contribute to the social support relationships in the early migration stages. Twenty-two Chinese immigrants in Japan underwent semistructured interviews, the data from which were analyzed qualitatively. The author identified three impression management strategies that related to concepts of shared "face," social debt and benevolence, and independence. All three reflect the Chinese concept of face. This social context enhanced immigrants' commitment to support relationships and to the use of available support from Japanese providers. The author discusses differences between face and self-esteem in terms of impression management strategies. The findings suggest that cultural conflict must be recognized if integration of cultural differences between the two countries is to be achieved.     

糖尿病患者慢性并发症及其影响因素研究

目的:调查与分析糖尿病患者中并发症情况及其影响因素,为预防和控制并发症提供依据。方法:选取在门诊连续治疗3个月以上糖尿病患者,通过门诊访谈、病历调查,收集患者的人口学资料、心血管危险因素、疾病控制情况及慢性并发症发生情况。结果:经调查289名患者,并发症排前三位的为白内障、神经病变和微量白蛋白尿。相关因素分析显示与病程、年龄、饮酒、血压、血脂有关。结论:积极控制血糖、血压、血脂、适量饮酒以及对年龄大、病程长者加强随访能延缓并发症的发生。     

Life review as a therapeutic frame in the treatment of young adults with AIDS

In this article, the author describes developmental and clinical issues in the use of life review as a therapeutic frame in psychotherapy of young adults with acquired immune deficiency syndrome. Presentation of clinical data suggests that elaboration of life narratives, by means of reminiscence, may help people to regain a cohesive sense of self, carry out psychological and social tasks, and revise life structures in the context of the illness experience. The author demonstrates how narrative approaches, informed by developmental theory, shift the focus from disability and dysfunction to concern for relative health and personal growth in social intervention with this population. Emergent research issues also are identified.     

The role of narrative and metaphor in the cancer life story: a theoretical analysis

Being diagnosed with cancer can be one of those critical incidents that negatively affect the self. Identity is threatened when physical, psychological, and social consequences of chronic illness begin to erode one’s sense of self and challenge an individual’s ability to continue to present the self he or she prefers to present to others. Based on the notion of illness trajectory and adopting a Ricoeurian narrative perspective, this theoretical paper shall explore the impact of cancer disease on identity and establish the crucial importance of metaphor in the narratives of life with cancer. Findings indicate that in cancer narratives the illness experience supplies the narrative structure with temporal and spatial meeting points that make the narrative comprehensible and meaningful. Cancer forces identity changes not only from having to endure the long-term physical and psychosocial effects of the disease, but also from inevitable existential questions about life’s meaning. Improved medical knowledge today means improved ethnomedical practices. Metaphor can bridge the gap between the cancer experience and the world of technology and treatment, helping patients to symbolically control their illness.     

Disruption foreclosed: older women's cancer narratives

A challenge has emerged to Bury's (1982) conceptualization of chronic illness as biographical disruption. The idea that certain life circumstances--notably older age or the presence of significant health and social problems--render the experience of chronic illness biographically 'continuous' or 'reinforcing' has gained currency in the social study of chronic illness. This article draws from a qualitative study with women diagnosed with cancer in their 70s or 80s. Respondents' narratives suggest that a long life, especially a life characterized by struggle, does provide a context for the assessment of cancer as non-disruptive. However, the study offers evidence that a long life characterized by sufficiency may also be associated with an assessment of cancer as non-disruptive, and that older age and hardship sometimes render chronic illness especially problematic.Centrally, the article examines respondents' oft-cited commitment to avoid ;dwelling' on illness, highlighting how broad cultural and moral discourses, patterns of social interaction and structures of power combine to foreclose older women's accounts of disruption.     

The logic of well being: Therapeutic narratives in Cairo,Egypt

This paper examines understandings of curative action among women in a traditional (baladi) quarter of Cairo, Egypt. It is based on research in a mother-childhealth (MCH) clinic and the surrounding urban area. It probes healing strategies and understandings revealed in therapeutic narratives. These narratives are commentaries on disease progression, curative action and surrounding events—both relevant and irrelevant. Fragments of narratives embedded in conversation are framed by stylistic shifts; they are eventually codified into elaborated accounts which are referenced for years after the illness episode.Therapeutic narratives present a system of knowledge which mediates between the everyday experience of diagnosis and curative action and the cultural context (ethnoetiology, ethnophysiology, concepts of fate and envy). They provide a biographic and experimental context for perception and diagnosis of illness. They also facilitate transformation of diagnosis and prognosis. The article presents baladi therapeutic narratives as a specific instance of a culture-wide phenomenon of ‘tacking down’ illness episodes to make sense of them. Discussion also highlights the baladi-specific curative system with its principles of regularity and fluidity, and the baladi-specific logic of proximity, specificity, and multiplicity which organizes baladi therapeutic narratives.Cases presented demonstrate how baladi women evaluate the meaning of experience and action while recounting illness episodes and how they corroborate their curative action with past experience and community standards. Through continual re-evaluation a finely woven web of rationale evolves as a woman with a difficult problem such as delayed conception or a persistently weak child moves through curing strategies. Diagnosis is always subject to revision; explanations of what is happening are constantly generated—whether in respect of mundane activity or of the event's meaning.Narrative recounting is the locus par excellence for the aggregation of cognitions concerning a whimsical universe where baladi people's main power lies in their skill at verbal manipulation. However, it is not used in lieu of action. Narratives provide an arena for the negotiation of reality and of correct action; they do not discount reality, but make sense of it.     

A storybook method for exploring young children's views of illness causality in relation to the familial context

In this paper we describe a method for exploring young children's views of illness causality in social context. Studies of children's conceptualisation of illness have predominantly focused on the nature of children's knowledge rather than locating that knowledge within socio-cultural contexts. Adopting a socio-constructivist perspective we sought to identify the ways in which young children's illness causality concepts are embedded in the socio-cultural context of the family. Interviews were undertaken with four-year-old children, their parents/guardians, sibling/s aged five to nine years and two other family members. To aid the elicitation of young children's narrative accounts of illness causality, children were invited to construct a storybook about ‘getting sick’ utilising art materials and photographs of children experiencing illness. In this paper we describe this method, discuss its utility in eliciting illness narratives from pre-school children and provide suggestions for the use of this method in future research.     

Illness narratives: time, hope and HIV

Life threatening illness, such as HIV/AIDS, also threaten people's sense of identity and taken-for-granted assumptions about the temporal framing of their lives. In response, people often experience transformations in values, spirituality and life priorities. Drawing on a combined quantitative and qualitative study of people living with HIV/AIDS in Australia, three different narratives that people use to make sense of their illness experience are identified: linear restitution narratives, linear chaotic narratives and polyphonic narratives. Linear illness narratives colonise the future, assuming that the future can be controlled through human action. They emphasise a faith in medical science, tend to be secular and self-centred and assume the end of life to be in the distant future. Hope is focused on concrete outcomes such as improved health or material possessions. Linear narratives can be either restitutive or chaotic. Restitutive linear narratives anticipate a life that will mirror the narrative. Chaotic linear narratives anticipate a life that will fail to meet the linear ideal resulting in despair and depression. In contrast, polyphonic illness narratives are oriented toward the present, emphasising the unpredictability of the future. These narratives tend to include spiritual experiences, a communally oriented value system, and to recount increased self-understanding and the gaining of new insights as a consequence of their illness. Hope in polyphonic narratives is more abstract and focused on a celebration of mystery, surprise and creativity.     

The experiences and consequences of a multiple trauma event from the perspective of the patient

This was an ethnographic investigation with the aim of comprehending the meanings of the trauma experience among multiple trauma patients. The following techniques were used for data collection: direct observation, semi-structured interview and field diary. Biographical narratives were obtained from eleven trauma victims, and ten relatives as secondary informants. The data analysis considered the set of data of each participant and all data of all subjects, searching for differences and similarities. The meanings attributed to the trauma experience are associated with interrelated feelings of fear, insecurity, anger, vulnerability and suffering and to the meanings of quality of life that converge to valorize health and work appreciation and support by social networks. This analysis shows that the concepts and experiences of the trauma are conditioning factors of the health-disease process and they are essential in planning public health actions to meet the needs of individuals.     

Biographical value: towards a conceptualisation of the commodification of illness narratives in contemporary healthcare

Illness narratives play a central role in social studies of health and illness, serving as both a key theoretical focus and a popular research method. Despite this, relatively little work has gone into conceptualising how and why illness narratives – be they in books, websites, television or other media – are commodified in contemporary healthcare and its social environment; namely, how distinctive forms of value are generated in the production, circulation, use and exchange of illness narratives. In this article we propose the notion of biographical value as a first step towards conceptualising the values attributed to illness narratives in this context. Based on a secondary analysis of 37 interviews with people affected by 15 different health conditions in the UK (all of whom have shared their illness experiences across various media) and drawing on understandings of value in research on the bioeconomy and the concept of biovalue in particular, we sketch out how epistemic, ethical and economic forms of value converge and co‐constitute each other in the notion of biographical value and in broader economies of illness experiences.