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.     

How children and young people construct and negotiate living with medical technology

Increasing numbers of children need the support of medical technology for their survival and wellbeing, yet little is known about their experiences of living technology-assisted lives. This study aimed to explore how this group of children experience and construct medical technology and its influence on their identity and social relationships. Using a Grounded Theory approach, 28 children/young people aged between 8 and 19 years old and using different types of medical devices were recruited via nursing services in England. Data were collected by in-depth interviews conducted in children's homes. The medical technology occupied an ambivalent position in children's lives being seen as having both an enabling and disabling presence. Children actively engaged in work to incorporate the technology into their lives and bodies by developing strategies to manage their condition, the technology and their identities. This body work appeared to be driven by a desire to 'normalise' their bodies and their lives. Technologies were shaped to integrate them into everyday life and children managed their self-presentation and controlled information about their condition. This work was ongoing, responding to changing social contexts and relationships. For these children the process of 'growing up' involves incorporating disability, illness and technology. This study contributes to knowledge by examining how medical technology is constructed by children whose lives are dependent on it and illuminating the resources and strategies they use to manage their identity and negotiate peer culture interactions and norms.     

SOCIAL CONSTRUCTIONS OF BREAST CANCER

In contrast to other life-threatening diseases, in which mortality is understood as the fundamental threat, much popular and professional discourse about breast cancer focuses on such issues as the identity, body image, and self-worth of the afflicted woman. Within the Western biomedical tradition, the meaning ascribed to breast cancer has been strongly influenced by competing social interpretations. In this paper, we contend that such social constructions shape the manner in which women experience breast cancer, including their decision making in response to treatment options as well as their strategies for coping with and making sense of breast cancer illness. We argue that an appreciation of the historical and cultural contexts in which breast cancer imagery has been constructed helps to explain the confusing array of ideologies that confront contemporary women diagnosed with breast cancer.     

Social constructions of breast cancer

In contrast to other life-threatening diseases, in which mortality is understood as the fundamental threat, much popular and professional discourse about breast cancer focuses on such issues as the identity, body image, and self-worth of the afflicted woman. Within the Western biomedical tradition, the meaning ascribed to breast cancer has been strongly influenced by competing social interpretations. In this paper, we contend that such social constructions shape the manner in which women experience breast cancer, including their decision making in response to treatment options as well as their strategies for coping with and making sense of breast cancer illness. We argue that an appreciation of the historical and cultural contexts in which breast cancer imagery has been constructed helps to explain the confusing array of ideologies that confront contemporary women diagnosed with breast cancer.     

The limits of narrative: medical student resistance to confronting inequality and oppression in literature and beyond

INTRODUCTION: Upon designing and implementing a literature course on family values for Year 4 medical students, we found that while the supposed benefits of literary inquiry were to lead students to a deeper understanding of difficult issues such as illness and violence in the family, many of our students were unable to engage critically with the course material. This, we believe, was a result of their resistance to confronting issues such as inequality and oppression. This paper is an attempt to theorise student resistance to difficult, unruly subjects they encounter in a literature class, particularly those surrounding race, gender, social class and sexual identity. METHODS: We modify some of the expansive claims made by narrative medicine and put forth a new pedagogical and curricular approach to the uses of literature in medical education. RESULTS: We found that many students resisted course material and corresponding discussions, especially those related to sexual identity and non-traditional family values, male-female relationships and white racism. DISCUSSION: To reduce student resistance, we pose a more critical approach to narrative inquiry in medical settings that may deepen students' willingness to imagine what it is like to be someone who is suffering, and to work against oppressive social structures that sustain such suffering. Thus, we recommend moving narrative inquiry beyond a focus on the self and the patient in that individualised, circumscribed relationship and into a collective process involving the social, political, cultural and economic conditions that affect health and well-being.     

“You don't need a prescription to go gluten-free”: The scientific self-diagnosis of celiac disease

We explore the social process of celiac disease diagnosis using fieldwork in the United States with two celiac support groups, interviews, and a virtual ethnography of an online discussion board. Distinguishing between medical diagnosis, self-diagnosis, and scientific self-diagnosis, we examine patients' varied paths to diagnosis and their attempts to legitimize symptoms as celiac disease. Web-based direct-access testing (DAT) permits patients to bypass physician requisition for testing in their diagnostic quest. While such laboratories do not diagnose disease per se, they provide the consumer with the scientific information necessary to self-diagnose. This scientific self-diagnosis grants individuals greater legitimacy for their claims of an illness identity than self-diagnosis alone, but less legitimacy than medical diagnosis. We examine the implications of scientific self-diagnosis for the social construction of diagnosis and professional and lay ways of knowing.     

Psychoanalytic sociology and the medical encounter: Parsons and beyond

While sociologists earlier this century often used insights derived from psychoanalytic theory in their writings, contemporary sociology has largely tended to ignore this body of work. This is as true of medical sociologists as it is of others, despite the fact that the ‘founding father’ of medical sociology, Talcott Parsons, used psychoanalytic perspectives extensively in his theorising on the social aspects of medicine and health. In this paper I make a case for a return to a medical sociology that incorporates understandings of subjectivity derived from psychoanalytic writings, with particular reference to the medical encounter and the illness experience. The paper begins with an overview of psychoanalytic sociology. I go on to review the major insights Parsons developed in his writings and the work of other writers who have more recently used psychoanalytic theory productively in theorising the sociocultural dimensions of medicine and health care. The paper concludes with some thoughts about future directions for taking up the psychoanalytic perspective in the sociology of health and illness.     

Discourses of normality and difference: responses to diagnosis and treatment of gynaecological cancer of Australian women

By comparison to other cancers such as breast and lung cancer, women in Australia are relatively infrequently diagnosed with gynaecological cancers. Apart from cervical cancer, public health information on gynaecological cancer is limited, as are published stories from gynaecological cancer survivors in women's magazines. Our qualitative study investigated how women with gynaecological cancers develop an identity in relation to their illness, and examined the extent of, and reasons for, a sense of perceived difference. The study was conducted between 2001 and 2003 and included in-depth interviews with 52 women aged 27-80 years diagnosed with gynaecological cancer within the past 5 years. Our analysis illustrates how women draw on a wider cancer discourse to make sense of their own illness, which gave them a sense of commonality. However, some women, predominantly those who were diagnosed with cancer of the vulva or vagina, or who underwent particular uncommon or unfamiliar treatments such as brachytherapy, had difficulties situating their illness within the wider cancer discourse. This had implications for women when accessing social support.     

Patient Perceptions of Illness Identity in Cancer Clinical Trial Decision-Making

When patients are diagnosed with cancer, they begin to negotiate their illness identity in relation to their past and future selves, their relationships, and their group memberships. Thus, how patients view their cancer in relation to their other identities may affect how and why they make particular decisions about treatment options. Using the Communication Theory of Identity (CTI), the current study explores: (1) how and why illness identity is framed across identity layers in relation to one particular cancer treatment: participation in a cancer clinical trial (CT); and (2) how and why patients experience identity conflicts while making their treatment decisions. Semi-structured, in-depth interviews were analyzed for 46 cancer patients who were offered a CT. Results of a grounded theory analysis indicated that patients expressed separate identity frames (e.g., personal, relational, and communal), aligned identity frames (e.g., personal and communal), and identity conflicts (e.g., personal-personal). This study theoretically shows how and why patient illness identity relates to cancer treatment decision-making as well as how and why patients relate (and conflict) with the cancer communal identity frame. Practical implications include how healthcare providers and family members can support patient decision-making through awareness of and accommodating to identity shifts.     

Narratives and healing: exploring one family's stories of cancer survivorship

This study investigates the narratives of one couple who lived through life-changing events following a cancer diagnosis. The narratives of the cancer survivor and her husband are explored as they struggle to cope with their situation, provide support for one another, and consider their changing personal identities. This research addresses the communication dilemmas that often occur when family members, friends, and providers do not know how to respond to an individual diagnosed with cancer. The rationale for this study is threefold. First, this study advocates the need for learning about the composition of survivor identities over the course of a life-threatening illness. Second, this study seeks to understand how illness survivors and their family members use narratives as a method of communicating their changing identities. Finally, communicating about illness is often perceived as 'taboo', and this study may encourage others to be a part of the participants' stories and learn more about why those stories are often concealed. We learn from these three narratives that supportive relationships are central to healing and that it is through communication among family members that identities are composed and recomposed throughout the illness journey. This research affects communication, social support, identity, and emotion literature and is aligned with human appraisal theories as well. Finally, it offers insights into the ways in which we talk about, hear about, and learn about illness.     

Overlooked and underutilized: the critical role of leisure interventions in facilitating social support throughout breast cancer treatment and recovery

Breast cancer is a life event experienced by many women and is one that impacts various aspects of a woman's life including her occupational and family roles. A social worker is often an important part of a woman's health care team following a breast cancer diagnosis as well as throughout treatment, providing assistance in helping women to cope with negative social psychological effects associated with the illness experience. The purpose of this article is to provide social workers with an opportunity to consider the utilization of empirically established interventions such as social support from the relatively unknown field of leisure science. Through semi-structured interviews with eight women, the role and meaning of leisure and social support in the lives of women with breast cancer were explored. The findings indicated these women experienced and perceived social support through leisure activities with friends and family during and following treatment and also through their volunteer work following treatment. The research can help social workers understand the potential role of leisure interventions in meeting the needs of women with breast cancer throughout their illness experience. Implications for social work education are also highlighted.     

Women's health in urban Mali: Social predictors and health itineraries

Social and marital factors may influence women's health outcomes. This is of particular relevance in sub-Saharan Africa, where women's health indicators lag behind the rest of the world. Our study examines the impact of social mediators of women's health during key events (pregnancy and illness) in urban Mali. In this cross-sectional study, we interviewed 324 women aged 15-80, living in Bamako, the capital city, in 1999. We used mixed quantitative and qualitative methods to obtain detailed histories of pregnancy and illness during specific time periods preceding the survey. We examined the role of marital factors (polygyny, widowhood), social factors (sources of support and scales derived for social network and social power), and household wealth on women's therapeutic itineraries. We compared the sociodemographic characteristics of our sample with those of the 2001 Mali Demographic and Health Survey and used their data on contraception to enrich analyses. We found that most pregnant women delivered in a health center and most women sought medical care during an illness event. Household wealth influenced illness reporting, and financial concerns were obstacles to medical care. Polygyny was associated with lower prevalence of contraceptive use, lower social power, as well as with less support received during pregnancy from women's husbands and in-laws. Widowhood appeared to increase susceptibility to illness, while decreasing resort to biomedical care. Our social composite scores highlighted differences in healthcare utilization in an urban setting with near-uniform access to biomedical care. We validate the utility of locally-derived composite scores, which may provide a deeper understanding into the social mediation of health outcomes for women.     

Artworks, collective experience and claims for social justice: the case of women living with breast cancer

This article discusses the role of 'artworks' produced by women with breast cancer in the context of breast cancer activism. We argue that such works play a key role in making visible and collective the ideological issues surrounding this disease. They do this through their potential for anchoring social practices relating to its treatment and what might be done about it (Klawiter 2004, Swidler 2001). The article focuses upon the work of two women artists diagnosed with breast cancer--the British photographer Jo Spence, and Martha Hall, an American who made artist's books. We examine specific works from these collections, and the context of their production. In this way we show how and why artworks are important in establishing visual and discursive space related to social practices associated with disease regimes, and how they provide emancipatory potential for women living with breast cancer. We argue that artworks work through and on bodies to enable a redemptive and emancipatory potential. As mediators of representations of illness, they deserve attention from sociologists researching social movements, the sharing of illness experience and strategies for survival.     

Managing biomedical uncertainty: the technoscientific illness identity

This paper analyses how the biomedical uncertainty of breast cancer contributes to the development of a new type of illness identity that is grounded in biomedical knowledge, advanced technology, and biomedical health and risk surveillance. The technoscientific identity (TSI) develops through the application of sciences and technologies to one's sense of self. Analysing narrative data from 60 in-depth interviews with women diagnosed with breast cancer, this research demonstrates how women diagnosed with breast cancer develop and maintain TSIs through four processes: (1) immersion in professional biomedical knowledge, (2) locating themselves within a technoscientific framework, (3) receiving support for the emerging TSI from the medical system and support networks, and (4) eventually prioritising their biomedical classifications over their suffering. Developing a TSI enables people to make sense of biomedical information, make decisions, and manage medical processes and relationships in the face of biomedical and personal uncertainty even as it extends the reach of technoscience and biomedicalisation.     

“I know he controls cancer”: The meanings of religion among Black Caribbean and White British patients with advanced cancer

There is evidence that religion and spirituality affect psychosocial adjustment to cancer. However, little is known about the perceptions and meanings of religion and spirituality among Black and minority ethnic groups living with cancer in the UK. We conducted semi-structured interviews with 26 Black Caribbean and 19 White British patients living in South London boroughs with advanced cancer to explore how religion and spirituality influenced their self-reported cancer experience. Twenty-five Black Caribbean patients and 13/19 White British patients volunteered views on the place of religion or God in their life. Spirituality was rarely mentioned. Christianity was the only religion referred to. Strength of religious belief appeared to be more pronounced among Black Caribbean patients. Three main themes emerged from patients' accounts: the ways in which patients believed religion and belief in God helped them comprehend cancer; how they felt their faith and the emotional and practical support provided by church communities assisted them to live with the physical and psychological effects of their illness and its progression; and Black Caribbean patients identified the ways in which the experience of cancer promoted religious identity. We identified that patients from both ethnic groups appeared to derive benefit from their religious faith and belief in God. However, the manner in which these were understood and expressed in relation to their cancer was culturally shaped. We recommend that when health and social care professionals perform an assessment interview with patients from different cultural backgrounds to their own, opportunities are made for them to express information about their illness that may include religious and spiritual beliefs since these may alter perceptions of their illness and symptoms and thereby influence treatment decisions.     

"I know he controls cancer": the meanings of religion among Black Caribbean and White British patients with advanced cancer

There is evidence that religion and spirituality affect psychosocial adjustment to cancer. However, little is known about the perceptions and meanings of religion and spirituality among Black and minority ethnic groups living with cancer in the UK. We conducted semi-structured interviews with 26 Black Caribbean and 19 White British patients living in South London boroughs with advanced cancer to explore how religion and spirituality influenced their self-reported cancer experience. Twenty-five Black Caribbean patients and 13/19 White British patients volunteered views on the place of religion or God in their life. Spirituality was rarely mentioned. Christianity was the only religion referred to. Strength of religious belief appeared to be more pronounced among Black Caribbean patients. Three main themes emerged from patients' accounts: the ways in which patients believed religion and belief in God helped them comprehend cancer; how they felt their faith and the emotional and practical support provided by church communities assisted them to live with the physical and psychological effects of their illness and its progression; and Black Caribbean patients identified the ways in which the experience of cancer promoted religious identity. We identified that patients from both ethnic groups appeared to derive benefit from their religious faith and belief in God. However, the manner in which these were understood and expressed in relation to their cancer was culturally shaped. We recommend that when health and social care professionals perform an assessment interview with patients from different cultural backgrounds to their own, opportunities are made for them to express information about their illness that may include religious and spiritual beliefs since these may alter perceptions of their illness and symptoms and thereby influence treatment decisions.     

The Social Meanings of Traditional Chinese Medicine: Elderly Chinese Immigrants’ Health Practice in the United States

We situate elderly Chinese immigrants' utilization of traditional Chinese medicine (TCM) in social contexts (e.g., family and social networks), exploring how TCM is used as a tool, a resource, and a product of meaning-construction in their everyday life. We conducted in in-depth interviews with 20 elderly Chinese immigrants in the United State, exploring the complexity of their understanding and practice of TCM. We used grounded theory to identify the set of meanings that are particular to elderly Chinese immigrants' use of TCM as a part of their health practice. For our participants, TCM is not just a resource for illness management. Instead, incorporating TCM in their health practice allows them to: (a) perform and reaffirm their cultural identity as Chinese, (b) maintain their moral status and fulfill their social roles, and (c) pass down health knowledge and cultural heritage. Clinical implications were discussed.     

How to build an "active" patient? The work of AIDS associations in France

"What is an "active" patient?" is a question that arises in most medicine and illness-related social science research. This article examines the normative work carried out by AIDS associations in France to define an "active" patient in healthcare and research. While the fight against AIDS is often presented as being homogenous, we look at the diversity of opinion between different associations (Aides, Act Up-Paris, Actions Traitements and Positifs). We find four different cases: the patient as manager of his illness, the empowerment of patients, the science-wise patient and the experimenter. Systematic comparison of these cases shows that these perceptions of the "active" patient, in terms of the same pathology, are based upon different ways of seeing: the nature of the relationships between the different types of knowledge of the illness (scientific knowledge, clinical knowledge, experience of the illness) and the distribution of roles and powers among the various actors in the healthcare system (the government, pharmaceutical companies, the medical profession, the patients). This article highlights the historical dynamics which allow us to have a better understanding of these differences, especially the major distinction between two generations of associations, which adopted different positions with regard to their public identity.     

'Part of the team': professional identity and social exclusivity in medical students

Medical Education 2011: 45 : 1220–1229 Objectives Medical students must develop not only their professional identity but also inclusive social attitudes for effective medical practice in the future. This study explores the elements that contribute to medical students’ sense of professional identity and investigates the concept of social exclusivity and how this might relate to students’ development of their identity as medical professionals. Methods The study is based on qualitative data gathered in telephone interviews with 13 medical students enrolled in Years 1 or 3 at an undergraduate medical school at a university in Australia. The questions were open‐ended and asked students about their experiences in medical school, sense of identity and social connections. Results Two main components contributed to a strong sense of professional identity in medical students: professional inclusivity and social exclusivity. Students experienced professional inclusivity when they attended clinical placements and when they were treated as future medical professionals by lecturers, doctors and patients. Social exclusivity was demonstrated by participants’ perceptions of themselves as socially separate from non‐medical students and isolated from students in other disciplines. Students described a sense of peer unity and a shared sense of identity as medical students within the medical school. Conclusions It is important to understand how students develop their sense of identity as medical professionals and the ways in which medical education and clinical placements can influence this professional identity. Although this study noted a very strong sense of social exclusivity in its findings, there were also high levels of intra‐discipline inclusivity. These results suggest that there is a reciprocal and reinforcing relationship between student experiences of professional inclusivity and social exclusivity that creates a defined sense of professional identity.     

Men's adjustment to their partners' breast cancer: a dyadic coping perspective

The continuing increase in cancer rates among women in the United States is forcing more men to experience the impact of breast cancer on their relationships. Using 71 male partners of newly diagnosed breast cancer patients, this study assessed how dyadic coping strategies affected men's adjustment to their partners' illness. While their partners were undergoing treatment, participants completed standardized instruments that measured emotional well-being, illness intrusiveness, and dyadic coping styles. Regression analysis revealed significant associations between coping styles and illness intrusiveness. In addition, depression predisposed men to poorer adjustment and affected their coping patterns. The findings emphasize that social workers must work with patients and partners to develop positive couple coping strategies. Practice implications for social workers are addressed.