The self as capital in the narrative economy: how biographical testimonies move activism in the Global South

This article analyses and theorises the practice of biographical storytelling of HIV‐positive AIDS activists in South Africa. Combining research in illness narratives, studies of emotions in social activism and analysis of global health institutions in Africa, I explore how biographical self‐narrations are deployed to facilitate access to resources and knowledge and thus acquire material and symbolic value. I illustrate my argument through the analysis of the case of an AIDS activist who became a professional biographical storyteller. Based on the analysis which I claim to represent wider dynamics in human‐rights‐based health activism in the Global South, I propose the concept of narrative economies by which I mean the set of exchange relationships within which biographical self‐narrations circulate and produce social value for individuals and organisations.     

Inter‐embodiment and the experience of genetic testing for familial hypercholesterolaemia

In this article we explore the concept of inter‐embodiment and its potential for advancing sociological research into illness biography and genetic identity. Inter‐embodiment theory views embodied knowledge as produced through relations between bodies, as opposed to originating from within the body or as the product of relations between disembodied selves. Drawing on a qualitative study in which we interviewed 38 individuals about their experiences of discovering they had high cholesterol and undergoing genetic testing for familial hypercholesterolaemia (FH), we discuss how their narratives may be understood from an inter‐embodiment perspective. The participants frequently talked at length about their family histories of high cholesterol and cardiovascular disease. Through these accounts, we develop the concept of the family corpus in order to highlight the role body networks play in shaping lay constructions of genetic identity and a familial disease biography. The notion of a family corpus, we argue, is useful in understanding why genetic testing for FH was experienced as either biographical re‐enforcement or as biographical disruption. We conclude by discussing the implications of our findings for future sociological research into illness biography and genetic identity.     

‘It seems like you're going around in circles’: recurrent biographical disruption constructed through the past,present and anticipated future in the narratives of young adults with inflammatory bowel disease

Biographical disruption and related concepts continue to be widely drawn upon in explaining how individuals experience chronic illness. Through in‐depth examination of the narrative experiences of two young adults with inflammatory bowel disease (IBD), this article aims to contribute to the continuing theoretical elaboration of biographical disruption, and in turn offer new insights into how young adults experience this condition. The cases are analysed from an interaction‐based, constructionist perspective, through which it is argued that the relapse‐remission nature of IBD can give rise to a particular form of recurrent biographical disruption, constructed in narrative through a complex configuration of past, present and anticipated future experiences. The two young adults are found to give different meaning to this recurrent disruption in terms of its significance and consequences – whilst Samuel represents an ongoing cycle of profound disruption and biographical reinstatement, Edith normalises the cycle of disruption and its role in her ongoing biography. Therefore, moving beyond the notion of ‘normal illness’ observed in previous research literature, the concept of ‘normal recurrent disruption’ is proposed. Finally, it is argued that this recurrent biographical disruption may be experienced particularly severely in young adulthood owing to the unique pressures and expectations of this lifestage.     

Troubling biographical disruption: narratives of unconcern about hepatitis C diagnosis

This paper explores the impact of hepatitis C diagnosis among participants of a recent qualitative study based in New Zealand and Australia. The findings of this research were unique with regard to the small amount of existing literature on the topic. Whilst most social research indicates that diagnosis with hepatitis C is a disruptive or distressing experience, study participants were almost evenly divided between those who reported being distressed by diagnosis and those who described contracting hepatitis C as 'no big deal'. The varied nature of participants' narratives about their hepatitis C diagnosis indicates that the experience of biographical disruption is contextual: dependent upon previous experiences of illness, marginalisation or hardship, and the extent to which hepatitis C is an unknown entity or normalised within community networks. This paper draws on the theoretical frameworks of biographical disruption, normalisation and dys-appearance to illuminate these and other contextual issues informing participants' narratives of unconcern about hepatitis C diagnosis.     

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.     

Engagement in leisure and physical activities: analysing the biographical disruptions of a rare chronic disease in France

Using the biographical disruption literature, this article examines how the experience of illness – in this case, pemphigus – reconfigures engagement in leisure activities, and how these activities are integrated into the biographies of persons with a rare chronic illness. Among the changes imposed by the illness, leisure activities are especially enlightening, as they primarily depend on the body. The article is based on a study of 50 interviews of persons with pemphigus, a rare and chronic dermatological disorder. The ways in which they relate to leisure activities give a new perspective on biographical disruption. The first striking observation is how diverse they are: illness does not level social differences or lived experience, and can even further consolidate commitment to engagements. We identified four types of engagement in leisure activities: disengagement, which reveals biographical disruption; adapted engagement, leading individuals toward low-risk physical activities; engagement in medicalised normalisation; and salutary engagement.     

Risk society online: Zika virus,social media and distrust in the Centers for Disease Control and Prevention

While social construction of illness research has examined the redefinition of medically defined illness as non‐illness by laypersons, nothing has considered this process alongside emerging infectious diseases (EIDs). Using Gidden's notion of modern risk society and distrust in expert authority, this paper examines how social media posts construct Zika virus as nonhazardous while displaying a distrust in research and prevention. Using qualitative content analysis, we examine 801 posts on the Centers for Disease Control and Prevention's (CDC) Facebook page to highlight the interplay between risk, the social construction of Zika and trust in experts. Three themes are discussed, including Zika: (i) as legitimate public health threat; (ii) as product of CDC corruption and (iii) used to question medical expertise. We find the latter two themes supportive of Gidden's focus on risk and distrust in expert authority and discuss the danger of constructing EIDs as products of corrupt expert authority on public health social media platforms.     

Using photographs to capture women's experiences of chemotherapy: reflecting on the method

This article examines the value of using the photo-elicitation method for generating health-related narratives. Drawing on research in which women kept a photographic record of their experiences of chemotherapy treatment for breast cancer, this research explored how this method (a) produced elaborate accounts of illness experiences through an exploration of the process of representing experiences and through an interrogation of the images themselves; (b) allowed an opportunity to capture experiences over time and a way of capturing the past, which can then be reexplored from the present; (c) enabled patients to retain control over their images of themselves and how they choose to represent their experiences; and (d) provided a window into the private, everyday experiences of patients away from a health care setting.     

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.     

Blue space geographies: Enabling health in place

Drawing from research on therapeutic landscapes and relationships between environment, health and wellbeing, we propose the idea of ‘healthy blue space’ as an important new development Complementing research on healthy green space, blue space is defined as; ‘health-enabling places and spaces, where water is at the centre of a range of environments with identifiable potential for the promotion of human wellbeing’. Using theoretical ideas from emotional and relational geographies and critical understandings of salutogenesis, the value of blue space to health and wellbeing is recognised and evaluated. Six individual papers from five different countries consider how health can be enabled in mixed blue space settings. Four sub-themes; embodiment, inter-subjectivity, activity and meaning, document multiple experiences within a range of healthy blue spaces. Finally, we suggest a considerable research agenda – theoretical, methodological and applied – for future work within different forms of blue space. All are suggested as having public health policy relevance in social and public space.     

Breast cancer in two regimes: the impact of social movements on illness experience

This article uses the narrative of one woman, Clara Larson, to explore changes over time in the experiences of illness available to women diagnosed with breast cancer. To claim that different illness experiences become available at different times is simply to acknowledge that experiences of disease are shaped not only by the individual circumstances of disease sufferers and the particular character of their pathologies, but by culturally, spatially and historically specific regimes of practices. This article explores the impact of social movements on the regime of breast cancer and makes four contributions to the scholarship on illness experience. First, it offers the concept disease regime as a way of conceptualising the structural shaping of illness experience. Second, it demonstrates the value of incorporating social movements more thoroughly into the study of illness experience. Third, it proposes that social movements change illness experiences in two ways: (1) by changing the sufferer or her relationship to the regime's practices; and (2) by changing and expanding the regime's actual practices. And fourth, it demonstrates how gender and sexuality are constituted within disease regimes and are challenged by social movements. This article is informed by four years of ethnographic research conducted in the San Francisco Bay Area between 1994 and 1998, supplemented by historical research and more than 40 taped interviews and oral histories with current and former breast cancer patients, activists, educators, scientists, support group leaders and volunteers.     

Understanding how men experience,express and cope with mental distress: where next?

In line with the shift towards prioritising lay accounts and narratives of chronic illness in sociology, there is an emerging literature on men, their subjectivities and experiences of mental distress. We argue in this paper that subjectivities and distress among men are an important area for critical sociological research. Very little is known about men’s subjectivities or the meanings they give to – and how they cope with or seek help for – distress. At the same time, current theories of gender relations, performativity and wellbeing as they pertain to men are likely to shed further light on subjectivity and distress. However, current theories (and qualitative research involving men and women) are pointing to considerable complexity. In this paper, we outline what is known about distress and men, and consider the utility of gender relations, performativity, subjectivities and wellbeing for a better understanding of distress. We also ask: What other factors influence distress, and how should these be considered in relation to men and masculinities? What are the implications for research and policy?     

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.     

‘… in the project they really care for us’: Meaning and experiences of participating in a clinical study of first-line treatment for malaria and HIV in Tanzanian adults

Critiques of biomedical research in low-resource settings typically centre on clinical trials and the ‘dissymmetries of power’ between the researched and those benefiting from the products of research. It is important to extend this critical lens to other forms of global health research. We conducted a qualitative study in Tanzania to explore meaning and experiences of participating in a clinical observational study evaluating the safety and efficacy of current practice for treating HIV and malaria co-infection. Focus group discussions and in-depth interviews were undertaken with 124 study participants, study staff and health workers. Participants' understanding of the study's research aims was limited, but the practice of participation – engaging with research staff and materials – appeared to facilitate interpretations of the study's value, conceptualised as a ‘service’. For those peripheral to the study, however, interpretations of it reflected existing suspicions of experimental research. Our findings indicate the importance of considering the expectations, roles and responsibilities constructed through the practice of participation in different types of research, and how they relate to legacies of research. Understanding how networks of research practice intersect local social and historical contexts can extend discussions of collaboration and engagement with research in low-resource settings.     

Ethnographic reflections on communicative inequities,global health relationships,and two decades of HIV in the Bolivian press

ABSTRACT

This article draws on two decades of media representations of HIV, ethnographic research among people living with HIV, and an analysis of global health programms in Bolivia. In doing so, we chart the evolution of media representations in relation to the global health context and the implications of these representations for people living with HIV. Our overarching argument is that media discourses on HIV in Bolivia have consistently been produced in a context of an unequal balance of power between global health bodies and local actors. This power imbalance has enabled global health bodies operating in Bolivia to maintain authority in producing local narratives about HIV, even when these narratives do not adequately capture the particularities of the Bolivian context. The mismatch between dominant global health narratives that have infiltrated the Bolivian media and ethnographic realities can have deleterious effects on people living with HIV. We draw on the concept communicative inequities to highlight how global health bodies shape dominant media narratives and the ways these dominant narratives at times misrepresent ethnographic realities. Thus, a media analysis informed by ethnographic experiences offers a unique lens for interrogating the implications of global health interventions.     

Reneotiating identity: cancer narratives

We frame the work of living with cancer as one which is identity-altering. Interviews with a heterogeneous group of cancer patients of varying sites and stages were used to conceptualise the identity work as involving disrupted feelings of fit, renegotiating identity, and biographical work. Patient narratives reflect these categories depending on their stage of illness and their experiences in medical institutions.‘Identity work’ is used to describe the process of patients' evaluations of the meaning of their illness within the actual context of ongoing, organised social relationships, including the medical system. We discuss the implications for narrative analyses in the social sciences.     

Boy Interrupted – Biographical disruption during the transition to adulthood

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.     

What is heterosexual coercion? Interpreting narratives from young people in Mexico City

Freedom from sexual coercion is frequently cited as essential for good sexual health. Sexual experiences cannot usually be observed directly, and interpretation of interview data is therefore crucial in our understanding of sexual behaviour. This paper explores the ways in which narratives can be used to understand sexual experiences, using coercion as a specific example. The narratives examined are from interviews with young people in low-income areas of Mexico City. This study demonstrates that sexual coercion is impossible to define objectively. In addition, the concept of coercion is focused too much on women, excluding men's negative sexual experiences, and can include events that the 'victims' do not see as coercive. Coercion is a highly subjective and fluid concept, limiting its value as a defining element of sexual health. An alternative way of conceptualising coercive experiences is suggested.     

Discussing the effects of prostate cancer beyond biographical disruption and new normalcy: the experiences of men with prostate cancer in Germany

The concept of biographical disruption has been used to explain the experience of a cancer diagnosis. Studies on cancer experience increasingly suggest that people diagnosed in older age may not have such disruptive experiences. Prostate cancer is diagnosed more often in older men and is often considered a disease of old age; furthermore, the signs of illness in prostate cancer and the signs of ageing might become convoluted. With this in mind, this paper aims to explore how 42 men with prostate cancer who participated in an interview study respond to and make sense of bodily changes. The sample was selected using a maximum variation strategy in order to describe a range of possible experiences with prostate cancer. Analysis was conducted thematically. The men’s narratives tell of the constant process of dealing with ageing-related and/or cancer-related changes to both their bodies and their social interactions, and their struggle to disentangle the related effects of ageing and/or cancer on their bodies. We describe how men “muddle through” problems of urinary leakage, potency and loss of libido. We then identify how men attributed changes as part of ageing and/or cancer to (better) manage the experiences of loss.     

The Photo-Instrument as a Health Care Intervention

The aim of this study is to describe how hermeneutic photography and one application of hermeneutic photography in particular, namely the photo-instrument, can be used as a health care intervention that fosters meaning (re-)construction of mental illness experiences. Studies into the ways how patients construct meaning in illness narratives indicate that aesthetic expressions of experiences may play an important role in meaning making and sharing. The study is part of a larger research project devoted to understanding the photostories that result from groups of psychiatric patients using the photo-instrument. Within a focused ethnography approach we employed a qualitative design of a single case study. Text analysis of photostories was combined with observational data. Data were analyzed using hermeneutic theory. Participant observations were used for triangulation and complementarity. The interaction and collaboration between health care professionals and patients in the context of a photo group emerged as core concept that underlies the photo-instrument. The interaction triggered a reframing of meaning in the patient’s illness narrative that offered new perspectives on positive identity growth. The role of visualizing meaning in images was found to lend a dynamic power to the process and triggered a dialectic between real life circumstances and imagination played out in the context of situated action. The findings suggest that a positive reframing of meaning in illness narratives is facilitated by the photo-instrument.