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.     

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: fact or fiction?

There is currently considerable renewed interest in narrative analysis in the humanities, social sciences and medicine. Illness narratives, particularly those of patients or lay people, are a particular focus in health related settings. This paper discusses the background to this interest, especially its roots in critiques of medical dominance and distinctions between disease and illness, drawn by sociologists and anthropologists in the 1970s. The current emphasis on patient or personal narratives can also be seen to stem from changes in morbidity patterns, the expansion of information about disease and illness, and in public debates about the effectiveness of medicine. The paper then goes on to outline a framework for analysing illness narratives. This involves exploring three types of narrative form: 'contingent narratives' which address beliefs about the origins of disease, the proximate causes of an illness episode, and the immediate effects of illness on everyday life; 'moral narratives' that provide accounts of (and help to constitute) changes between the person, the illness and social identity, and which help to (re) establish the moral status of the individual or help maintain social distance; and 'core narratives' that reveal connections between the lay person's experiences and deeper cultural levels of meaning attached to suffering and illness. Here, distinctions are drawn between such sub forms as heroic, tragic, ironic and comic, and regressive/progressive narratives. Finally, the paper discusses some of the methodological issues raised by narrative analysis. Given the complex character of illness narratives, their social and psychological functions, together with the motivational issues to which they relate, it is suggested that they constitute a major challenge for sociological analysis. From this viewpoint current claims about narrative analysis in medicine need to be treated with caution.     

‘If I can walk that far’: space and embodiment in stories of illness and recovery

Illness and recovery transform embodied experience, and transform the experience of space. Space, in turn, is a valuable resource in the telling of an illness narrative. Starting from a phenomenological perspective that takes the body to be the centre of experience, and hence of selfhood and storytelling, this article offers an argument for and an approach to analysing space as a narrative resource in stories about illness and recovery. Using a case study of one woman's stories about her amputation, it demonstrates how both narrated space and narrating space can be used as devices to structure the narrative and position its characters and interlocutors to construct the narrator's embodied experiences and identities. The article reveals intersections between embodied experience, space, and narrative identity construction, offering a new way of attending to illness narratives and a new way of engaging with narrative space.     

On interviewing people with pets: reflections from qualitative research on people with long‐term conditions

There is mounting evidence that pets are associated with physiological, psychological and social benefits for humans. Much of this research has come from western countries, where there have been consistent calls for greater engagement with pet ownership and health. Drawing on a secondary analysis of 61 in‐depth interviews with people, or carers of people, with long‐term conditions, we explore how pets feature in people's narrative accounts of their experiences. Our findings demonstrate the multifaceted nature of people's relationships with pets, and the embedded and embodied ways in which human–nonhuman interactions are played out in narratives of chronic illness. Our study differs from other work on pets and health in that, by returning to the interview video recordings, we were able to explore the sometimes three‐way interactions, the co(a)gency, between participants, pets and researchers. Pets were often presented as important family members, yet the researchers’ responses to the presence or talk about pets was often markedly different from their reactions to other household members. We conclude with cautioning against the downgrading of pets in narrative health research. Narrative approaches may invite participants to talk about what is important to them, yet they clearly have limitations in practice.     

News release

The article attempts to answer the question: What is the nature of children’s everyday narratives in a day care centre context? The theoretical framework of this study is based on a narrative approach. The research material was gathered through applying the methodology of narrative ethnography. The article is based on observational material collected from three groups of children within day care centres over the course of one year. The material was analysed through dialogic analysis of narratives. For the purpose of the article, one narrative is used as an evocative anecdote to illustrate research findings revealing the emerging nature of children’s narratives characterised by fragmentariness, multimodality, collaboration and a complex relationship between narrative and context. The article challenges the predominant formalist discourse on children’s narratives, and suggests utilising the pedagogical potential of young children’s narratives in the day care centre context.     

Co‐construction of chronic illness narratives by older stroke survivors and their spouses

Illness narratives have mainly focused on individual patients’ accounts, and particularly those of people experiencing the onset of chronic illness in mid‐life. However, a growing number of older people are spending their later life with their partner, with both experiencing complex morbidities. We examine the shared creation of meanings among older stroke survivors and their spouses and the implications for individual and couple identity. Joint biographical narrative interviews were held with 13 stroke survivors aged 75–85 and their spouses. The analysis examined both narrative content and narrative style. Three main types of co‐presentation of identity were identified. The ‘united couple’ described couples who pulled together and emphasised their accommodation of the stroke and normality as a couple, despite often considerable disability, and was strongly underpinned by collaborative interaction in interviews. Caring relationships were distinguished as ‘positive’, involving self‐reliant couples who took pride in how they managed and ‘frustrated’ in couples who emphasised the difficulties of caring and hardships experienced and were characterised by a conflictual style of narrative. We argue that joint interviews provide new forms of data that extend notions of how illness is lived and demonstrates how the marital relationship can mediate the experience of chronic illness and disability and its impact on identity.     

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.     

Dualities of dementia illness narratives and their role in a narrative economy

The concept of ‘narrative economies’ has recently been proposed as a set of exchange relationships that, through biography and story‐telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre‐existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia – like our participants – being called upon to account for their experience, as a means of developing a politicised ‘collective illness identity’. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.     

A narrative analysis of the birth stories of early‐age mothers

The telling of birth stories (i.e. stories that describe women's experiences of giving birth) is a common and important social practice. Whereas most research on birth narratives reflects the stories of middle‐class, ‘adult’ women, we examine how the birth stories told by early‐age mothers interconnect with broader narratives regarding social stigma and childbearing at ‘too early’ an age. Drawing on narrative theory, we analyse in‐depth interviews with 81 mothers (ages 15–24 years) conducted in Greater Vancouver and Prince George, Canada, in 2014–15. Their accounts of giving birth reveal the central importance of birth narratives in their identity formation as young mothers. Participants’ narratives illuminated the complex interactions among identity formation, social expectations, and negotiations of social and physical spaces as they narrated their experiences of labour and birth. Through the use of narrative inquiry, we examine the ways in which re‐telling the experience of giving birth serves to situate young mothers in relation to their past and future selves. These personal stories are also told in relation to a meta‐narrative regarding social stigma faced by ‘teenage’ mothers, as well as the public's ‘gaze’ on motherhood in general – even within the labour and delivery room.     

Dangerous knowledge vs. dangerous ignorance: Risk narratives on sex education in the Russian press

The paper is devoted to analysis of the debates on sex education in the Russian press. ‘Risk narrative structure’ of media articles on sex education was determined. This structure represents a system of mutually constituting elements, which include object of risk, risks themselves, solutions to their prevention, solutions opponents, and type of society these solutions presuppose. It is argued that analysis of risks with the aid of ‘risk narrative structures’ can be a useful development of sociocultural theory of risk, as competing risk narratives can be fully grasped only when considered not as discrete claims about different ‘risks’ but as coherent systems of interrelated meanings. On the basis of this structure, competent risk media narratives of proponents and opponents of sex education were reconstructed. In these narratives different definitions of ‘children’ as objects of risk were constructed, and so were types of risks, and types of society. It would be oversimplifying to consider debates on sex education as a battle of ‘enlightened rationality’ against ‘dark irrationality.’ In each risk narrative the solution (introduction or ban of sex education) is a logically following element in the respective risk narrative. While sex education advocates were concerned about negative consequences of children's sexual behaviour and defence of the ‘civilised society's moral boundaries, the opposite side was concerned about retaining children's moral purity and defence of ‘traditional’ moral boundaries.     

Parenting a young person with mental health problems: temporal disruption and reconstruction

The article explores the experiences of parents living with a young person with mental health problems. Qualitative interviews were conducted with 25 parents (18 mothers and 7 fathers) whose child had a diagnosed psychiatric condition. It is argued that the parents engaged in a form of narrative reconstruction of their dual roles as parents and carers as they tried to make sense of the illness in their lives by reconstructing their past, present and future experiences. The concept 'responsibility' was threaded through the parents' narratives and is discussed in relation to three key dimensions - moral responsibility; causal responsibility; and responsibility for self. It is argued that the moral imperative to care for their child was the dominant theme in the parents' narratives but that this was challenged by their lack of knowledge of psychiatric conditions; their interactions with healthcare professionals; their relationships with their child; and their difficulties in coping with the extended parental responsibility that arose from their caring role.     

Theorising Inequalities in Health: The Place of Lay Knowledge

This paper contributes to the development of theory and research on inequalities in health. Our central premise is that these are currently limited because they fail adequately to address the relationship between agency and structure, and that lay knowledge in the form of narrative has a significant contribution to make to this endeavour. The paper is divided into three sections. In the first section we briefly review the existing, largely quantitative research on inequalities in health. We then move on to consider some of the most significant critiques of this body of work highlighting three issues: the pursuit of overly simple unidimensional explanations within ‘risk factor’ epidemiology and the (probably inevitable) inability of this research tradition to encompass the full complexity of social processes; the failure to consider the social context of individual behaviour and, in particular, the possibility for, and determinants of, creative human agency; and, thirdly, the need for ‘place’ and ‘time’ (both historical and biographical) to be given greater theoretical prominence. In the final section of the paper the potential theoretical significance of ‘place’ and ‘lay knowledge’, and the relationship between these concepts, in inequalities research is explored. Here we suggest three developments as a necessary condition for a more adequate theoretical framework in this field. We consider first the need for the conceptualisation and measurement of ‘place’ within a historical context, as the location in which macro social structures impact on people’s lives. Second, we argue for a re-conceptualisation of lay knowledge about everyday life in general and the nature and causes of health and illness in particular, as narratives which have embedded within them explanations for what people do and why – and which, in turn, shape social action. Finally, we suggest that this narrative knowledge is also the medium through which people locate themselves within the places they inhabit and determine how to act within and upon them. Lay knowledge therefore offers a vitally important but neglected perspective on the relationship between social context and the experience of health and illness at the individual and population level.     

The effects of health narratives: Examining the moderating role of persuasive intent

Prior research has indicated that narratives are more persuasive than nonnarrative messages. One of the reasons for this effectiveness is that the narratives’ intention to persuade is often not explicit, thus making them less likely to be disputed. The goal of this research is to examine the moderating role of persuasive intent in narrative persuasion. To do so, we conducted a 2 (Message format: narrative vs. nonnarrative messages) × 2 (Persuasive intent: intent vs. no intent) experiment with a factorial design among 205 participants on the effects of health narrative messages. Results indicated that persuasive intent undermined the effects of health narratives on persuasion by reducing believability and increasing reactance. Both believability and reactance partially mediated the effects of the narrative messages on attitudes and behavioral intention.     

Breaking down barriers: exploring the potential for social care practice with trans survivors of domestic abuse

There is increasing recognition that domestic abuse takes place outside the heteronormative paradigm of social life. This paper presents a discussion of the findings of doctoral research which explores trans people's experiences of domestic abuse, their social care needs and whether these are met by domestic abuse agencies. This paper foregrounds debate on the intersections of domestic abuse, trans communities and social care provision as this research, and previous studies, suggests that trans survivors do not seek out or benefit from social care intervention. Qualitative data, collected via narrative interviews, were collected during 2012 from participants mainly located in the United Kingdom (two participants were based in the United States). A total of 24 interviews were undertaken with trans people (n = 15) and social care practitioners (n = 9). Data were examined using a voice‐centred relational technique. The findings reveal that barriers are multiple and complex but work could be undertaken to encourage help‐seeking behaviours. Barriers include expectations of a transphobic response and ‘Othering’ practices; lack of entitlement felt by trans people; lack of knowledge/misunderstandings about trans social care needs; heteronormative bias of existing services; and practitioner attitudes fixed to notions about gender as binary. The paper ends by proposing a framework for practice with trans survivors which incorporates a person‐centred, narrative approach.     

Bridging the discursive gap between lay and medical discourse in care coordination

For older people with multiple chronic co‐morbidities, strategies to coordinate care depend heavily on information exchange. We analyse the information‐sharing difficulties arising from differences between patients’ oral narratives and medical sense‐making; and whether a modified form of ‘narrative medicine’ might mitigate them. We systematically compared 66 general practice patients’ own narratives of their health problems and care with the contents of their clinical records. Data were collected in England during 2012–13. Patients’ narratives differed from the accounts in their medical record, especially the summary, regarding mobility, falls, mental health, physical frailty and its consequences for accessing care. Parts of patients’ viewpoints were never formally encoded, parts were lost when clinicians de‐coded it, parts supplemented, and sometimes the whole narrative was re‐framed. These discrepancies appeared to restrict the patient record's utility even for GPs for the purposes of risk stratification, case management, knowing what other care‐givers were doing, and coordinating care. The findings suggest combining the encoding/decoding theory of communication with inter‐subjectivity and intentionality theories as sequential, complementary elements of an explanation of how patients communicate with clinicians. A revised form of narrative medicine might mitigate the discursive gap and its consequences for care coordination.     

Scaffolding young Australian women's journey to motherhood: a narrative understanding

Pregnant and young mothers' stories often go untold within community social and health service policy, planning and practice. Consequently, there is a significant gap between young women's experiences of motherhood and current service provision. This study was undertaken in response to a paucity of observational and contextually rich research that explores young women's experiences of pregnancy and motherhood, including the role a community service played in scaffolding their motherhood journeys. Fundamental to this study's purpose was the premise that to improve planning and delivery of more appropriate services for this group, we need to listen, consult and consider what life is like for young mothers. The purpose of this paper is to describe the role a community service played in scaffolding young women's experiences as they transitioned to motherhood. Using a narrative approach, this study draws on data collected from contextual observations of 31 informants and 11 in‐depth interviews over 7 months of fieldwork in 2010 at a community service in the Peel region of Western Australia. The integral role a community service played in the young women's transition to motherhood was analysed thematically and captured in three metaphorical themes, finding a circle of friends, weaving a tapestry and turning the page. The young women's storied experiences of motherhood present a strong argument for radical re‐visioning of community and social health policy, practice and service delivery for young mothers. The findings revealed that judgement‐free services that foster social and supportive relationships were integral in developing positive motherhood identities. The power of narrative and social learning when working with young mothers suggests that social models of health that foster a relational, narrative approach to practice are fundamental to young mothers finding their own voices and solutions and becoming active agents in re‐authoring future narratives of hope, autonomy and agency.     

Mother protection,child survival: narrative perspectives on child mental health services underutilization

In the United States, increased national attention has generated a wealth of public health and epidemiologic research examining disparities in African American children’s mental health services utilization. Research has not yet been extended to examining the social structural mechanisms that keep these disparities stable and in place. Drawing from a larger urban ethnographic field study exploring the ‘everyday’ of health and illness within and across African American families living in an inner city public housing community, in this article I document the narratives of four African American mothers to illustrate how social structural mechanisms shape their decisions to seek or not mental health services for their children. I frame mothers’ decisions in terms of everyday violence, drawing attention to the institutionalized injustices that are normalized and rendered invisible because of their routine pervasiveness. I conclude with a discussion of integrating structural interventions to modify or reduce disparities in African American children’s mental health services utilization.     

Ethnicity and cultural models of recovery from breast cancer

Objective. Recovery narratives describe the culturally shared understandings about the ideal or desirable way to recover from an illness experience. This paper examines ethnic differences in recovery narratives among women participating in breast cancer support groups in Central Florida, USA. It compares groups serving African-American, Latina, and European American women, with the objective of better understanding the appeal of ethnic-specific illness support groups for culturally diverse populations.

Design. A mixed-method study design combined qualitative and quantitative measures, including in-depth interviews, participant observation at support group meetings, collection of printed documents, and a structured survey.

Results. Core elements of the recovery narrative drew from the dominant societal cancer discourse of optimism and personal transformation through adversity; however, important ethnic differences were evident in the meaning assigned to these themes. Groups gave distinctive salience to themes of faith and spirituality, empowerment through the migration experience, and becoming a better person through the journey of recovery.

Conclusion. The findings suggest that ethnic cancer support groups draw upon dominant societal discourses about cancer, but they espouse distinctive recovery narratives that are consonant with the groups’ cultural models of illness. Similarity between ethnic members’ individual recovery narratives and that of the group may contribute to the appeal of ethnic illness support groups for culturally diverse populations.     

Discovering a new identity after brain injury

Acquired brain injury (ABI) is one example of the chronic conditions that people of varying socioeconomic status must bear. Concerns with identity and self are endemic to surviving brain injury. For this study, a brain tumour survivor injured 17 years earlier, took photographs of her life with brain injury and discussed them with other brain injury survivors and the author. Narrative analysis methods were used to analyse her photographs and interview, and generate a visual illness narrative with four photographs and their accompanying interview text. Her visual illness narrative reveals discovery of a post‐brain injury identity whose multiplicity of self‐definitions includes chef, brain injury survivor, gardener, and self‐advocate. Study findings reveal that identity issues of importance to brain injury survivors can include (1) learning the new, post‐brain injury self, and (2) building a new identity whose multiple, partial identities include (a) the new brain injured self, (b) an old self (with its residual strengths), and (c) a self who does meaningful activities (e.g. parenting, partnering, art, gardening, volunteering, helping others, or paid work). Study results suggest that using visual research methods can help to put biographical disruption such as brain injury into perspective as a life lived.