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.     

Neither ‘foolish’ nor ‘finished’: identity control among older adults with HIV in rural Malawi

Prevalence of HIV after age 50 is considerable, especially in southern Africa. Negative social constructions of HIV in older age, and the health consequences of ageing with the virus, mean that having HIV presents a challenge for many people's roles and social memberships, threatening to disrupt their sense of self. Using constructivist grounded theory and qualitative data from rural Malawi, this paper describes how older men and women deal with these identity challenges. Drawing on a symbolic interactionist framework, it uses identity control theory to explore how the study's participants presented their post‐diagnosis behaviours in ways that maintained their most significant pre‐diagnosis identities as ‘adults’, a label they gave to the core identity of being a person who belongs in the social world. Considering the processes through which older people with HIV navigated challenges to their identities in light of the intersectional influences of HIV and age‐related stigma and illness, provides insight into how older people might experience HIV, as well as informing theoretical understandings of identity formation and maintenance in light of chronic and/or stigmatising illness more broadly.     

'We never expected this to happen': narratives of ageing with HIV among gay men living in London, UK

The proportion of HIV-positive people over the age of 50 is rapidly increasing in the UK. This reflects the use of antiretroviral therapies and the transformation of HIV from life-threatening disease to chronic treatable illness. In this study a biographical narrative approach was used to explore the lived experience of ageing in 10 HIV-positive gay men aged between 50 and 78. While some participants regarded ageing as an opportunity to continue progressing towards valued life goals, others were more ambivalent about their future prospects. The findings suggest that these differences were particularly influenced by an individual's biographic relationship to the history of the HIV epidemic rather than chronological age. Those with long histories of involvement with HIV were more likely to be disadvantaged by careers interrupted by illness, to be dependent on state benefits and to have social networks damaged by multiple AIDS-related bereavements. The research identifies a cohort of older gay men likely to require additional support in adapting to the challenge of growing older with HIV. The article also explores the construction of moral identities in relation to discourses of 'successful ageing' and the possibility of building supportive communities that are sensitive to the needs of older gay men.     

Bodily changes among people living with physical impairments and chronic illnesses: biographical disruption or normal illness?

This article focuses on individuals who are growing old with chronic illnesses and early onset impairments. Their experience of illness complications, bodily and functional losses is similar to what Bury has referred to as a biographical disruption. However, whereas Bury argues that a chronic illness amounts to a critical situation for the individual, partly due to its unexpected nature, this does not apply to the participants in our two studies. A second difference concerns Bury’s implicit suggestion that the disruption is a single event that is characteristic of the early stage of a chronic illness. Repeated disruptions seemed to shape the lives of several of those interviewed. At the same time, this article challenges studies which suggest that the notion of disruption is less relevant to people in later life and to those who have experienced difficult lives, and also questions the argument that continuity rather than change characterises the lives of people who have had chronic conditions since their early years. In its approach, the article responds to Williams’ request for studies in the sociology of chronic illness that extend the predominant biographical focus on the middle years of life to both ends of the life course.     

Rheumatoid arthritis and older women: Economics tell only part of the story

The triad of age, gender, and disabling chronic illness sets the stage for increased dependence and deprivation in later life. Women are three times more likely than men to be diagnosed with rheumatoid arthritis (RA). As a prototype of a chronic illness, RA affects all imensions of a woman's life, usually beginning with physical function, which results in loss of work, social, and recreational activities. Because women incur 40% more chronic illness and live longer than men do, they require more health care and supportive services as they age. Women typically earn less money during their working lives than do men and are more likely to be economically impoverished in old age. Research is needed to identify the multidimensional impact of RA on older women and to explore treatment, life‐style, and work options that will help younger cohorts of women prepare for their economic needs in old age.     

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.     

Impersonal,Interpersonal, and Hyperpersonal Social Support: Cancer and Older Adults

Although cancer occurs throughout the life span, many of the most frequently occurring types of cancer increase as we grow older. In fact, only cardiovascular disease accounts for more deaths in adults 65 years of age and older. One of the ways that cancer patients cope or adapt to their illness is through socially supportive communicative interactions and relationships. Cutrona and Russell (1990) argued that social support is multidimensional and suggested that social support is most effective when the support needs of the individual are consistent with the type of social support being offered by the support provider. From the communicative perspective, the notion of optimal matching between the types of social support desired and the type of social support offered is extended to include the type of relationship between the communicants. In addition, it is argued that computer-mediated social support can be superior to face-to-face social support. This article attempts to identify some of the conditions under which this is true.     

Impersonal,interpersonal, and hyperpersonal social support: cancer and older adults

Although cancer occurs throughout the life span, many of the most frequently occurring types of cancer increase as we grow older. In fact, only cardiovascular disease accounts for more deaths in adults 65 years of age and older. One of the ways that cancer patients cope or adapt to their illness is through socially supportive communicative interactions and relationships. Cutrona and Russell (1990) argued that social support is multidimensional and suggested that social support is most effective when the support needs of the individual are consistent with the type of social support being offered by the support provider. From the communicative perspective, the notion of optimal matching between the types of social support desired and the type of social support offered is extended to include the type of relationship between the communicants. In addition, it is argued that computer-mediated social support can be superior to face-to-face social support. This article attempts to identify some of the conditions under which this is true.     

Life disruption and generic complexity: a social linguistic analysis of narratives of cancer illness

This paper draws on social linguistics to inquire into the meaning and function of complexity in illness narratives. According to social linguists, five different story-type genres occur in spoken English. These are illustrated and differentiated using examples drawn from 10 interviews with people who have undergone colectomy for colorectal cancer. In order to test a hypothesis that complexity in illness narratives is related to life disruption, the 10 accounts were ranked in terms of their generic complexity. Measures of life disruption were based on rankings furnished independently by two readers from different disciplines who were blind to the hypothesis being tested. These two rankings showed a high level of agreement (r(s) = 0.85, p<0.01). When the two life disruption rankings and the generic complexity ranking were compared, a high degree of concordance between the three rankings was observed (W = 0.91, p<0.01). No evidence was found of associations between generic complexity and gender, interviewer, surgical outcome in terms of stoma (p>0.05), age (p>0.7) nor time since diagnosis (p>0.1). We conclude that in this study, generic complexity was strongly and significantly related to life disruption. To explain the function of complexity in interaction, we characterise the illness narrative as a genre in its own right, and argue that illness narratives need to be considered both in terms of the work they do both on the listener and for the narrator. In the former case, complexity opens up a discursive space for the dynamic positioning of the interlocutor. In the latter case, we propose that complexity reflects the degree to which the process of re-ordering life by assigning meaning is occurring as the interaction unfolds. In both cases, complex narratives can thus be understood as "hard working" narratives.     

'Pressure of life': ethnicity as a mediating factor in mid-life and older peoples' experience of high blood pressure

Hypertension is a common condition which disproportionately affects African Caribbean people in England, yet this experience is rarely reported in the literature. Whilst a body of literature exists that explores chronic illness experience, little attention is paid to hypertension, nor to ethnicity as a mediating concept in chronic illness experience. This paper explores the meaning and consequences of hypertension for African Caribbean people residing in England. The study conducted was a qualitative study, informed by the ethnographic tradition. The study methods included the conduct of two focus group interviews (10 participants), 21 in-depth interviews and five vignette interviews. Thirty-six people in total participated in the study, both men and women, aged between 37 and 82 years (median age = 59.5 years) in two English cities. The sample was generated by contacting GP surgeries, community groups and associations and included economically active and retired people. The narrative accounts provided illuminate the personal biographies of the mid-life and older participants in the study, providing evidence as to how issues such as ethnicity, migration, cultural adaptation, racism and discrimination may impact upon the chronic illness experience. Participants' understandings of their self-defined condition of high blood pressure differed greatly from medical conceptualisations of the condition of hypertension. The implications of the study are that in order to provide effective health and social care for individuals of African Caribbean origin with hypertension, care-providers require insight into how migration and cultural adaptation may create major disruption to an individual's life trajectory, to which the subsequent diagnoses of chronic illness are relative in terms of the individual's response and adaptation.     

Risk, significance and biomedicalisation of a new population: older women's experience of osteoporosis screening

This article explores the illness experience associated with being diagnosed at risk of a long term chronic condition and discusses the implications of an emergent form of predictive medicine. We report on findings from a study involving 30 older women between the ages of 73-85 years of age recently screened for osteoporosis and informed that they are at a higher than average risk of breaking a bone in the next 10 years, but not formally diagnosed with osteoporosis. Data were gathered by the Adherence to Osteoporosis Medicine (ATOM) study using in-depth interviews with women in their own homes in Norfolk & Suffolk, UK in 2009-2010. We analyse and discuss the significance participants give to their new fracture risk status and consider the practical, physical and existential consequences of this 'diagnosis'. The findings are discussed under three broad themes: Predictive technology, meaning and the risk-of-illness experience; knowledge, understanding and the embodiment of fracture risk status; and, social implications of biomedicine for an ageing population. We argue that screening for osteoporosis and assessment of fracture risk can be understood as a process of biomedicalisation of ageing and bone health. This article offers insight into the meaning of risk status as an illness experience for older women. We conclude by discussing how biomedicalisation of a new population through diagnosis of fracture risk status has significance and consequence at both the individual and the societal level expanding the population of older women labelled at risk and increasing demand for biomedical tests and prescribed medication for the prevention of disease.     

The context of coping: a qualitative exploration of underlying inequalities that influence health services support for people living with long‐term conditions

Coping with chronic illness encapsulates both practical and emotional aspects of living life in relation to one's long‐term health condition(s). Dominant health psychology approaches for understanding coping, which underpin a more recent policy discourse on ‘self‐management’, focus sharply on the person affected by illness and potentially mask the influence of overarching social structure. In this paper we draw on qualitative interviews with 48 people living with long‐term conditions (LTCs), in order to highlight the role that structural configurations such as healthcare systems may play in either helping or hindering people's efforts to cope with chronic illness. We argue that coping is a social process in which health and related services, situated within their wider political‐economic contexts, play an active role in shaping people's attempts to live well with LTCs. More specifically, health systems are sites of social and cultural capital exchange that can differentially mobilise coping resources through access, continuity of care, and coordination across services. Whilst it is essential to recognise the personal agency of people living with chronic illness, it is also vital to acknowledge the underlying inequalities that affect the ways in which services can support such resourcefulness.     

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

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

Determinants of self rated health for Canadians with chronic disease and disability

OBJECTIVE: To identify the factors associated with self rated health of people with and without chronic health conditions or long term disability. SETTING: Canadian household population. DESIGN: Analysis of 1994/95 National Population Health Survey interview data with 13,995 respondents aged 20 years and older. Determinants of poor and good compared with excellent health were examined using multivariate nominal logistic regression. Factors included in the analyses were illness related (chronic disease, long and short-term disability, and pain) demographic, lifestyle (smoking, physical activity, drinking), and social psychological resources (mastery, chronic stress, distress, self esteem, and social support). RESULTS: Illness related variables were associated with poor health, with smaller but significant contributions from demographic and lifestyle factors. Psychological resources, especially high mastery and self esteem, are associated with better health in those with chronic conditions or disability. CONCLUSION: The determinants of self rated health for people with chronic illness and disability make the greatest contribution to the findings for the overall population.     

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.     

The Impact of Invisible Illness on Identity and Contextual Age Across the Life Span

This study explored the impact invisible illness has on identity, specifically contextual age, throughout the life span. It was grounded in the assumption that an individual's identity is formed through communicative interaction. Using social identity theory (Tajfel & Turner, 1986) as a framework, individuals' identities after disclosure of invisible illness were explored. Rubin and Rubin's (1986) Contextual Age Questionnaire was used to determine self-perceived as well as other-perceived contextual age. Invisibly ill individuals reported significantly "higher" contextual age scores than did same chronologically aged, matched non-ill individuals. In addition, the friends of invisibly ill individuals reported "higher" contextual age scores for the invisibly ill individuals than the self-reported scores of the same chronologically aged non-ill individuals. Interviews further revealed that illness instilled insight and that disclosure of illness provoked comments from others that led invisibly ill individuals to identify with older individuals. Future directions and limitations of this study are also discussed.     

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.     

The passing dilemma in socially invisible diseases: narratives on chronic headache

This contribution concerns the experience of chronic diseases and how it disrupts the trajectory of a person's biography, undermining his/her identity, self-reliance and social relationships. The study focuses particular attention on those diseases which have not yet been fully acknowledged and can, therefore, be considered a socially invisible disease: chronic headache is one of these. Thirty-one life stories were collected from patients attending a specialized headache centre in Northern Italy, and selected in order to include all common varieties of chronic headache. Following the principles of grounded theory, interviews began by adopting a minimal theoretical framework which consisted of asking people how they became aware of the objective (disease), subjective (illness) and social (sickness) aspects of their condition. The analysis highlighted particular points in the patients’ life trajectories: first, the biographical disruption that takes place because of the disease; second, how people succeed or fail in identity negotiation, which is vital for developing an acceptable social representation of the disease. Results show that patient's choices follow a vicious circle, where a partial social representation of the disease is produced. People who suffer from chronic headache face a dilemma in social relationships: should they conceal their disease, or make it evident? If they conceal, any possible social representation of the disease is denied, which could lead to carrying the burden of the disease alone, with no social support. On the other hand, making chronic headache visible could result in stigma.     

Older people in transition from illness to health: trajectories of recovery

Despite growing interest in the meaning of illness and recovery in older age, much of the research has focused on particular conditions, such as stroke; yet, illness in later life is considerably more diverse. In this article, we examine the experience of illness and process of recovery through interviews with 64 older people receiving intermediate care, a form of transitional care to support people between illness and resumption of everyday life routines. They describe four recovery trajectories generated from individuals' accounts of illness and their perspective on recovery: cure and restoration, adjusting to discontinuity and establishing markers of continuity, getting back and keeping going, and managing uncertainty. We conclude that several interacting factors shape the meaning of illness and the process of recovery in later life: prior circumstances, illness onset and trajectory, comorbid health problems, and cumulative loss in advanced older age.     

Women's experience of HIV as a chronic illness in South Africa: hard‐earned lives,biographical disruption and moral career

This article presents findings from a longitudinal qualitative study (48 in‐depth interviews with 12 women on antiretroviral treatment (ART)) exploring the experience of living with HIV as a chronic illness in South Africa by applying the structural and interactionist perspectives on chronic illness. The structural perspective indicates that the illness experience needs to be contextualised within the wider framework of the women's hard‐earned lives: throughout the interviews, the women tended to refuse singularising HIV/AIDS and continuously framed the illness within the context of general hardship and adversity. Employing an interactionist perspective, the repeated interviews demonstrated the partial applicability of the concept of biographical disruption to the illness experience: most women experienced feelings of denial and disbelief upon diagnosis, but the availability of ART clearly mitigated the impact of HIV on their biographies. In addition, our findings demonstrate that the interaction between structural aspects, (stigmatising) social relations, and the illness (and its treatment) determines the never‐ending cycle of identity appraisals, revisions and improvements, rendering the moral career of the HIV‐positive women on ART a continuous work in progress.