Biographical Disruption Research Articles

On the borderline of diabetes: understanding how individuals resist and reframe diabetes risk

Medical sociologists highlight diagnosis as a critical moment in understanding the illness experience and have extended analysis to the growing focus on ‘predisease states’ in relation to policy and medical practice. The biomedicalisation of diabetes risk, labelled as ‘prediabetes’, is one predisease area Public Health England have prioritised via the roll-out of a national diabetes prevention programme (NDPP). The label and language of prediabetes frames this risk as a medical condition and this could have both social and practical consequences for how individuals manage this risk. Through data drawn from individual interviews and observations, we explore how individuals respond to the label of prediabetes and how they interpret and respond to their ‘at-risk’ status. The findings demonstrate that for some participants, the framing of risk seemed consistent with a biomedical paradigm as reflected within clinical discussions and the language used. For others, previous knowledge or experiences were drawn upon to resist, downplay and reframe their at-risk status. Our analysis reflects varying degrees of resistance where for some this seemed to mitigate against the threat of ‘biographical disruption’ associated with the risks of developing future diabetes. In such cases, respondents also resisted the notion that they were ‘candidates’. However, in some cases, there was little resistance to the label of prediabetes, yet the perceived risk was ‘low’ in the context of competing health priorities or in relation to their expectations of health status in older age. Across participants, these varied responses were reflected in corresponding resistance to key messages promoting health behaviour change.

Tobacco use and cessation in the context of ART adherence: Insights from a qualitative study in HIV clinics in Uganda.

Sub-Saharan Africa carries a disproportionate burden of human immunodeficiency virus (HIV). Tobacco use amongst people living with HIV is higher than in the general population even though it increases the risk of life-threatening opportunistic infections including tuberculosis (TB). Research on tobacco use and cessation amongst people living with HIV in Africa is sparse and it is not clear what interventions might achieve lasting cessation. We carried out qualitative interviews in Uganda in 2019 with 12 current and 13 former tobacco users (19 men and 6 women) receiving antiretroviral therapy (ART) in four contrasting locations. We also interviewed 13 HIV clinic staff. We found that tobacco use and cessation were tied into the wider moral framework of ART adherence, but that the therapeutic citizenship fashioned by ART regimes was experienced more as social control than empowerment. Patients were advised to stop using tobacco; those who did not concealed this from health workers, who associated both tobacco and alcohol use with ART adherence failure. Most of those who quit tobacco did so following the biographical disruption of serious TB rather than HIV diagnosis or ART treatment, but social support from family and friends was key to sustained cessation. We put forward a model of barriers and facilitators to smoking cessation and ART adherence based on engagement with either ‘reputation’ or ‘respectability’. Reputation involved pressure to enjoy tobacco with friends whereas family-oriented respectability demanded cessation, but those excluded by isolation or precarity escaped anxiety and depression by smoking and drinking with their peers.

From paradise to prison: The disrupted spatial imaginaries of victimised female British migrants in Australia

AbstractBritish migration to Australia may be motivated by the paradisiacal glow in which the country is framed, but personal lives after arrival can upset these pre‐migratory spatial imaginaries, evoking feelings of darkness, doom, horror, isolation, and imprisonment. This article uses two concepts—that of spatial imaginaries and that of biographical disruptions—to unpack the stories of three British migrant women whose idealised expectations of Australia are overturned after each enters a violent marriage with an Australian man. By exploring the similarities of these women's tumultuous marital lives, I reveal how spatial imaginaries can be drastically altered by biographical disruptions that occur within intimate settings, particularly events that are violent in nature. This article highlights the unsolidified, contingent, and relational nature of migrant spatial imaginaries with an emphasis on how the startling, biographically disruptive, and emotionally unsettling nature of intimate partner violence fundamentally shapes the way spaces are viewed.

Adolescents' and their parents' experiences of using a closed-loop system to manage type 1 diabetes in everyday life: qualitative study.

Type 1 diabetes can have life-shattering consequences for adolescents and parents. A closed-loop system is a cutting-edge technology which automatically regulates glucose to reduce the burden of diabetes management. We explored adolescents' and parents' experiences of using this technology to understand how it affects their biographies and everyday lives. In-depth interviews with 18 adolescents newly diagnosed with type 1 diabetes and 21 parents after ≥12 months experience using closed-loop technology. Data were analysed thematically. Participants reported very few disruptions to their lives when using a closed-loop. Reports of family conflict were minimal as the closed-loop enabled dietary flexibility and glucose levels to be checked effortlessly. Adolescents described doing 'normal' activities without worrying about high/low glucose, and parents reported allowing them to do so unsupervised because the closed-loop would regulate their glucose and keep them safe. Some adolescents expressed concerns about the visibility of components and, to avoid stigma, described curtailing activities such as swimming. Participants described how the closed-loop enabled adolescents to be in control of, or create distance from, diabetes. The closed-loop has life-enhancing consequences for both adolescents and parents and helps to reduce the biographical disruption of type 1 diabetes in this age group.

The experiences of mothers who have a child diagnosed with cancer

Objective: This qualitative study explored the experiences of mothers who had a child diagnosed with cancer. Design and Outcome Measure: Informed by Interpretative Phenomenological Analysis, semi-structured interviews were completed with 13 participants, transcribed verbatim with individual and cross-case analysis conducted. Results: One superordinate theme, Protecting My Child, Whatever the Cost, was identified with five related subordinate themes. Participants battled to protect the development of their ill child. They richly described the personal costs and losses experienced, including putting their life on hold, and lost time with their healthy children. Participants faced realities of cancer treatment that were incongruent with their goal of protecting their child. Self-care awareness was significant for well-being as they protected themselves from reminders of their child’s mortality. Despite living in a crisis, participants reported changes suggestive of posttraumatic growth. Conclusion: Childhood cancer brings profound psychosocial and biographical disruption to the lives of mothers as they lose socially valued roles and have their identity as competent mothers challenged. Mothers protect their child, often at a cost to their health and well-being but also bringing positive consequences. The findings offer insights for psychologists in supporting mothers to reclaim their identity as competent mothers and renegotiate their mothering expectations.

"Life Is Taking Me Where I Need to Go": Biographical Disruption and New Arrangements in the Lives of Female Family Carers of Children with Congenital Zika Syndrome in Pernambuco, Brazil.

The congenital Zika syndrome (CZS) epidemic in Brazil turned the spotlight on many other factors beyond illness, such as poverty, gender, and inequalities in health care. Women were the emblematic subjects in this study, not only because Zika virus is a vertical transmission disease, but also because women—in Brazil and elsewhere—typically represent the primary carers of children. This is a qualitative analytic study using semi-structured interviews with 23 female family carers of children with CZS in Brazil. Through the concept of biographical disruption, we analysed some of the social impacts experienced by women involved in caring for affected children. We identified that the arrival of a child with disabilities resulted in biographical disruption similar to that experienced by people with chronic illnesses. Social support networks were configured through an alliance between women from different generations, revealing solidarity networks, but also highlighting the absence of the state in tackling these social vulnerabilities. Tracing the pathways of these biographical narratives enables us to understand how women have acted to defend the value of their disabled children in a society structured on the model of body normativity and inequality. These results may provide clues to a more inclusive society, which confronts systems of gender oppression and the sexual division of labour focused on women.

The Body in the Mirror: Breast Cancer, Liminality and Borderlands

ABSTRACT Breast cancer is the most common cancer among women worldwide, and has a high mortality rate in northern Mexico. Its high rates present one of the principal health challenges of the California-Baja California border region. We employed “entangled” ethnography and interpretative phenomenological methods to explore breast cancer experiences among a group of Mexican immigrant women living on the US side of this border. We explore their trajectory from biographical disruption to biographical renewal. The entangled ethnographic approach includes reflections of the first author’s experience as a genetic breast cancer survivor.

Loneliness as a Biographical Disruption-Theoretical Implications for Understanding Changes in Loneliness.

ObjectivesWhile a great deal is known about the risk factors that increase vulnerability to loneliness in later life, little research has explored stability and change in levels of loneliness.MethodsNarrative interviews were conducted with 11 participants who were identified as being lonely during Wave 1 of the Maintaining Function and Well-being in Later Life Study Wales (CFAS Wales). The interviews were used to explore stability and change in levels of loneliness from the perspective of older people themselves. The interviews focused on participant’s perspectives of the events that triggered loneliness, stability, and change in levels of loneliness over time as well as participant’s responses to loneliness.ResultsThe findings show that participants experienced losses and loneliness as biographical disruption. How participants and their wider social network responded to these losses had implications for the individual’s trajectory through loneliness.DiscussionDrawing on a biographical lens, the study reframed the events that triggered loneliness as disruptive events. This article discusses the utility of biographical disruption in understanding stability and change in loneliness. The findings suggest how drawing on valued identities may help lonely adults transition out of loneliness.

Reflexive Self-Identity and Work: Working Women, Biographical Disruption and Agency

The article examines how women workers reflexively shape their self-identities and work identities following a significant biographical disruption incurred by breast cancer diagnosis and treatment. Based on interviews with 22 women navigating their post-diagnosis life course, the article addresses participants’ challenges in their relationships with paid employment, their responses and self-identity narratives. It finds that women strive to revise and innovate their self-identity and work identity in the midst of personal and social constraints in working life. They craft their cancer disruptive experiences into new developments of who they are, and want to be, as persons and as workers. Multiple intersectional features of participants’ work-related self-identity are identified, including reassessment of priorities, capabilities and workplace relations.

The contribution of the voluntary sector to mental health crisis care: a mixed-methods study

BackgroundWeaknesses in the provision of mental health crisis support are evident and improvements that include voluntary sector provision are promoted. There is a lack of evidence regarding the contribution of the voluntary sector and how this might be used to the best effect in mental health crisis care.AimTo investigate the contribution of voluntary sector organisations to mental health crisis care in England.DesignMultimethod sequential design with a comparative case study.SettingEngland, with four case studies in North England, East England, the Midlands and London.MethodThe method included a scoping literature review, a national survey of 1612 voluntary sector organisations, interviews with 27 national stakeholders and detailed mapping of the voluntary sector organisation provision in two regions (the north and south of England) to develop a taxonomy of voluntary sector organisations and to select four case studies. The case studies examined voluntary sector organisation crisis care provision as a system through interviews with local stakeholders (n = 73), eight focus groups with service users and carers and, at an individual level, narrative interviews with service users (n = 47) and carers (n = 12) to understand their crisis experience and service journey. There was extensive patient and public involvement in the study, including service users as co-researchers, to ensure validity. This affected the conduct of the study and the interpretation of the findings. The quality and the impact of the involvement was evaluated and commended.Main findingsA mental health crisis is considered a biographical disruption. Voluntary sector organisations can make an important contribution, characterised by a socially oriented and relational approach. Five types of relevant voluntary sector organisations were identified: (1) crisis-specific, (2) general mental health, (3) population-focused, (4) life-event-focused and (5) general social and community voluntary sector organisations. These voluntary sector organisations provide a range of support and have specific expertise. The availability and access to voluntary sector organisations varies and inequalities were evident for rural communities; black, Asian and minority ethnic communities; people who use substances; and people who identified as having a personality disorder. There was little evidence of well-developed crisis systems, with an underdeveloped approach to prevention and a lack of ongoing support.LimitationsThe survey response was low, reflecting the nature of voluntary sector organisations and demands on their time. This was a descriptive study, so evaluating outcomes from voluntary sector organisation support was beyond the scope of the study.ConclusionsThe current policy discourse frames a mental health crisis as an urgent event. Viewing a mental health crisis as a biographical disruption would better enable a wide range of contributory factors to be considered and addressed. Voluntary sector organisations have a distinctive and important role to play. The breadth of this contribution needs to be acknowledged and its role as an accessible alternative to inpatient provision prioritised.Future workA whole-system approach to mental health crisis provision is needed. The NHS, local authorities and the voluntary sector should establish how to effectively collaborate to meet the local population’s needs and to ensure the sustainability of the voluntary sector. Service users and carers from all communities need to be central to this.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full inHealth Services and Delivery Research; Vol. 8, No. 29. See the NIHR Journals Library website for further project information.

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.

Older adults’ perceptions of early rehabilitation and recovery after hip fracture surgery: a UK qualitative study

Purpose To explore older adult’s perceptions of early rehabilitation and recovery after hip fracture, as a complement to the UK standards for acute physiotherapy after hip fracture. Methods In-depth semi-structured interviews with 15 adults aged 60 years or more in hospital after hip fracture surgery. A thematic analysis approach with interpretation informed by Bury’s biographical disruption theoretical framework. Results Participants voiced the importance of self-determination, professional support, meaningful feedback, and social capital after hip fracture. Collaborative working with staff was required for meeting the UK standards. Participants voiced anxieties about their hip fracture when considered in conjunction with their age and co-existing conditions, anticipating a disruption to their previous physical and social activities. This new, more dependent, life situation was not acceptable to participants. Conclusions This study suggests hip fracture alone, was not perceived as a biographical disruption by older adults although it is presented as a potential tipping point in the loss of independence, contributing to the wider disruption of advancing age and co-existing conditions. For successful implementation of the UK standards, goal setting should consider patients in the wider context of their advancing age and co-existing conditions to empower them to define a fresh narrative of self. Implications for rehabilitation Hip fracture was perceived as a potential tipping point in the loss of independence, contributing to the wider disruption of advancing age and co-existing conditions. Participants expressed uncertainty over their ability to recover their previous identity in the absence of professional support and/or social capital. Healthcare professionals need to educate and empower older adults to take charge of their own recovery. For successful implementation of the UK standards for acute physiotherapy, there is a need to contextualize goal setting to empower patients to define a fresh narrative of self.

'My relationships have changed because I've changed': biographical disruption, personal relationships and the formation of an early menopausal subjectivity.

Early menopause (EM) or premature ovarian insufficiency (POI) can disrupt gendered and age-related expectations associated with perceived 'normative' biographies for young adult women, with implications for subjectivity and relationships. While previous qualitative research has concentrated on the impacts of EM/POI on biography and sense of self, in this article, we examine the enmeshment of personal relationships with the formation of early menopausal subjectivities. Drawing on research exploring concepts of 'biographical disruption' and personal relationships, and theoretical work on social norms and subject formation, we present findings from a narrative thematic analysis of 25 interviews with women diagnosed with spontaneous or medically induced EM/POI. We identify three main narrative 'types' of subjective and relational experience in response to the 'disruption' of EM/POI: interlude and continuity; disruption and adaptation; and disruption and ambivalence. Women's accounts of their experience of EM/POI indicate that the formation of early menopausal selves is mediated by the extent to which women and those around them identify with gendered norms related to reproduction and age. Consistent with theoretical perspectives that consider the self as relationally produced, we argue that the subjective and relational dimensions of EM/POI are intertwined and must be understood in tandem.

In a vigilant state of chronic disruption: how parents with a young child with type 1 diabetes negotiate events and moments of uncertainty

AbstractLiving as a parent and self‐care surrogate of a young child with type 1 diabetes (T1D) is demanding and a disruption to ‘normal’ routinised daily living. Research has mainly focused on the time of diagnosis as a one‐time biographical disruption. In this article, we will show how, in the case of families with young children with T1D, the biographical disruption can be viewed as a continuous state of vigilance that affects family functioning and ‘normal’ living. We will show this by focusing on the temporal events and moments that keep the families in a state of what we will term ‘chronic disruption’. The events are the transitions from hospitalisation to home, home to nursery, nursery to daycare, and daycare to school and preparations for social activities concerning the child. The moments are more fluid, ranging from daily interruptions when daycare workers and teachers call parents with doubts about self‐care to negotiations with institutions and municipalities and a constant state of worry.

Exploring the meaning of quality of life for assisted living residents: A photo-elicitation study

Assisted living is a popular alternative to residential care, promoting independence and enabling self-care through a supportive living environment. Practitioner understanding of quality of life (QoL) experiences are vital to facilitate good physical and mental health in assisted living. An idiographic case study approach explored resident experiences by combining photo-elicitation and interpretive phenomenological analysis. QoL was understood through three themes: facilitation of identity coherence and transition, the essential nature of socialising, and perceptions of a supportive environment. Assisted living has the potential to act as a bearer for cues of identity continuity with nostalgic devices facilitating environment transition and limiting biographical disruption. Furthermore, opportunities for social contact offer a protective function for residents adapting to negative life challenges such as bereavement. To foster health and QoL in withdrawn residents’ facilities should develop peer support programmes with benefits for both mentor and mentee.

Important Issues to Severe Trauma Survivors: A Qualitative Study.

Identify issues that are important to severe trauma survivors up to 3 years after the trauma. Severe trauma is the first cause of disability-adjusted life years worldwide, yet most attention has focused on acute care and the impact on long-term health is poorly evaluated. We conducted a large-scale qualitative study based on semi-structured phone interviews. Qualitative research methods involve the systematic collection, organization, and interpretation of conversations or textual data with patients to explore the meaning of a phenomenon experienced by individuals themselves. We randomly selected severe trauma survivors (abbreviated injury score ≥3 in at least 1 body region) who were receiving care in 6 urban academic level-I trauma centers in France between March 2015 and March 2018. We conducted double independent thematic analysis. Issues reported by patients were grouped into overarching domains by a panel of 5 experts in trauma care. Point of data saturation was estimated with a mathematical model. We included 340 participants from 3 months to 3 years after the trauma [median age: 41 years (Q1-Q3 24-54), median injury severity score: 17 (Q1-Q3 11-22)]. We identified 97 common issues that we grouped into 5 overarching domains: body and neurological issues (29 issues elicited by 277 participants), biographical disruption (23 issues, 210 participants), psychological and personality issues (21 issues, 147 participants), burden of treatment (14 issues, 145 participants), and altered relationships (10 issues, 87 participants). Time elapsed because the trauma, injury location, or in-hospital trauma severity did not affect the distribution of these domains across participants' answers. This qualitative study explored trauma survivors' experiences of the long-term effect of their injury and allowed for identifying a set of issues that they consider important, including dimensions that seem overlooked in trauma research. Our findings confirm that trauma is a chronic medical condition that demands new approaches to post-discharge and long-term care.

Holding space and transitional space: stroke survivors' lived experience of being on an acute stroke unit. A hermeneutic phenomenological study.

Despite substantial reorganisation of stroke unit provision in the United Kingdom, limited qualitative research has explored how stroke survivors experience the acute stroke unit. This hermeneutic phenomenological study used accounts from four stroke survivors who experienced one of two acute stroke units. Through detailed analysis, the acute stroke unit emerged as a meaningful space, in two distinct but interconnected forms. As holding space, the unit was understood to offer protection and safe haven, as the stroke survivors looked to cope and respond to the temporal, bodily, biographical disruption and significant vulnerability brought about by stroke and by being in hospital. Holding was fulfilled by different people (including their fellow stroke survivors) and reflected a human response to human need and existential vulnerability. This space, and the practices within it, functioned to hold them intimately but also at a distance from their prestroke lifeworld. As such, the acute stroke unit holding space was intertwined with how it supported, encouraged or provoked transition. In the transitional space of the acute stroke unit, stroke survivors described how they survived the hospital‐healthcare space, stroke unit and poststroke space. This paper articulates how transition was meaningfully signified through its absence or presence, as they transformed, relinquished or re‐asserted their ‘self’, and in one case, recovered whilst ‘in there’. The findings of this study provide phenomenological insight into stroke survivors’ lived experience, the meaningful holding and transitional contribution of the unit, and how these spatial forms were intertwined. These insights are discussed in relation to the existing evidence base and stroke unit provision.

Distance and acceptance: Identity formation in young adults with chronic health conditions.

Health has long been a chief concern of life course researchers, especially in examining early life. Research on chronic conditions and their impact on individual identity often center on biographical disruption or the idea of a bifurcation of "before and after" identities. This research examines identity formation in young adults with chronic health conditions that began in childhood, a population that continues to grow. This study focuses on young adults' narrative identities, both regarding how young adults describe the transition to adulthood and how cultural ideals of young adulthood and actors from institutions influence how they describe themselves. This study uses 22 in-depth qualitative interviews to reveal how young adults distance themselves from their conditions or move to acceptance through the narratives they tell about their health, feelings, and behaviors. This research suggests that identity confirmation by others forms an integral part of the nexus of health and the life course, shaping how adolescents make the transition into young adulthood. Social support from actors in institutions gives room to some young adults with chronic conditions to integrate their conditions into their narrative identities. This study reveals the social nature of young adult identities, and how cultural ideals guide them, precisely because it uses cases of young adults who must transition to adulthood in alternative ways.

Non-visible disease, the hidden disruptive experiences of chronic illness in adversity

ABSTRACT Objective: This study’s principal aim was to describe the lived reality for people with cardiovascular disease (CVD) and other chronic health conditions, who live in economically deprived neighbourhoods in a city in North West England. Methodology: This is a qualitative, exploratory study based on in-depth, semi-structured interviews with participants experiencing compromised cardiovascular health, conducted in August 2017. The study sample comprised 14 adults (3 females) aged 54 to 76. Thematic analysis was used for data analysis, and the biographical disruption concept was used as theoretical reference to explore the results. Wider health inequalities literature supplemented the individual experiences of chronic illness. Results: Four main themes were developed from the data: (1) chronic illness as a disruptive experience; (2) struggling for money; (3) lifestyle and health risks; and (4) reflections on current inequalities. The varied nature of participants’ narratives about their chronic illness indicated that the experience of biographical disruption depends on the wider socioeconomic and cultural factors of the individual. Discussion: This study suggests that biographical disruption theory combined with health inequalities contexts highlights the role of hidden suffering and enhances the understanding of chronic illness experiences and thus informs clinical management, service and public health planning.

Spirituality and Cancer: a Qualitative Study

Aims: Patients suffering from cancer are often confronted with an awareness of their own finiteness and with the fact that their life is now ruled by the cancer. This existential upheaval can be accompanied by spiritual “work” which contributes to the adjustment to the disease and to the conditions of the end of life. Spirituality can be defined as a process through which individuals seek for and give meaning to their life, feel connected to the self, to others, at the present moment and in what is sacred. Few studies in France have studied spirituality in the context of cancer. So, the aim of our research was to identify and to study the role of spiritual components in the experience of cancer.Procedure: We carried out 15 semi-directed interviews with patients at the medical oncology and palliative care department at the CHU in Timone (Marseille). A double analysis was performed: 1) a lexicographical analysis and 2) a thematic content analysis of the most typical interviews from the lexicographical analysis.Results: The lexicographical analysis highlighted three lexical classes. Class 1 represented the illness of cancer as a personal transformation (40.5%), Class 2 concerned the biographical disruption experience (13.4%) and Class 3 corresponded to daily life with the illness (46.1%). Moreover, the thematic content analysis revealed different themes testifying to spirituality in the lived experience of cancer, in particular the experience of and the relationship with the sacred, the relationship with transcendence and the role of spirituality in the lived experience of patients who are suffering from cancer.Conclusion: The two analyses of the interviews allowed us to identify the expression of spirituality. Spirituality was expressed as a resource, an “invisible spring,” allowing people to adjust to the extreme experience of the disease of cancer. Both “secular” and “central” dimensions of spirituality: the transcendence and the relationship with the sacred open perspectives for the integration of spirituality into the care of patients suffering from cancer, without threatening the principle of secularism in French hospitals.