Biographical Disruption Research Articles

Stories of chronic illness: exploring qualitative data through poetic transcriptions

As a research technique, poetic transcription transforms people’s stories and enables deeper analysis and engagement between participants, readers and researchers. Chronic illness is often characterised as a ‘biographical disruption’, which...

News repertoires‎ in destabilised everyday lives

Traditional media consumption in the form of reading, watching or listening is being replaced ‎by ephemeral practices such as clicking, searching and scanning, where the ‘checking circle’ has become ‎a daily routine of constant browsing, checking and posting. In particular, these interrelated practices ‎are constantly present among adolescents, who skilfully switch between multiple media, contexts and ‎situations. The interdependence of such cross-media uses suggests that empirical research should focus ‎beyond a single medium. The aim of this research was to examine news repertoires from the perspective of ‎adolescents and highlight how biographical disruption during the Covid-19 pandemic had affected news ‎consumption among young audiences. This article presents the results of a research project, within which ‎focus groups on a sample of 67 adolescents aged 12–19 years were conducted. It also provides an analysis ‎of a slightly smaller sample of 59 media sketches. The aim of the latter analysis was to identify the media ‎preferences and potential interactions of young people. Six distinct news repertoires have been identified, ‎which confirms the ambivalence of teenagers in terms of their media preferences. At the same time, ‎teenagers generate their own personal ‘news media assemblies’ within their disrupted everyday lives.‎

Disruption and Improvisation: Experiences of Loneliness for People With Chronic Illness.

Chronic illness can disrupt many aspects of life, including identity, social relationships, and anticipated life trajectories. Despite significant scholarship on chronic illness, we know less about the ways in which chronic illness impacts feelings of loneliness and how people with chronic illness deal with loneliness. Drawing on concepts of biographical disruption and liminality and data from walking and photo-elicitation interviews with 14 people, we aimed to explore how people with chronic illness experience loneliness in their everyday lives. Tracing how past and present illness experiences are implicated in the lived experience of loneliness and the strategies people use to manage loneliness, our findings illustrated that being caught in a liminal state where participants struggled to maintain and adapt to a new normality in life with chronic illness was a central thread woven throughout their experience of loneliness. Although participants drew on their personal agency and adopted strategies to account for, manage, and limit disruptions from chronic illness and loneliness, they found that their strategies were not completely effective or satisfactory. Chronic illness and loneliness continue to be largely considered as an individual's problem, limiting opportunities for people with chronic illness who experience loneliness to seek support and social connection. Our research highlighted that chronic illness and loneliness need to be acknowledged as both a personal and collective problem, with multi-level responses that involve individuals, communities, and society.

Sociocultural aspects of the medicalisation of infertility: a comparative reading of two illness narratives

This paper is a comparative reading of variations in the medicalisation of infertility caused by sociocultural aspects, in two illness narratives by patients: Elizabeth Katkin’s Conceivability (2018), a story of...

Parental illness work across the attention deficit hyperactivity disorder diagnostic journey.

The process of referral, assessment, and diagnosis of attention deficit hyperactivity disorder (ADHD) within the UK is often protracted. Given that parents are frequently the instigators of the diagnostic process, understanding the experience of parents is important. Drawing on findings from a longitudinal study, this article explores how the parental experience of the ADHD diagnostic journey includes three significant and distinct forms of 'illness work'. Twenty-one semi-structured serial interviews were conducted over a 2-year period with seven parents of children on the ADHD diagnostic journey in North East England. We present three significant forms of parental illness work: (1) The 'diagnostic quest', parental work recognising and fighting for their children's needs and selfhood, seeking diagnosis and engaging with systems, (2) 'self-biographical illness work', the personal parental biographical response to the diagnostic journey and (3) 'child biographical illness work and recontextualizing the child', parental biographical adjustment and recontextualisation of their children. We advance Rasmussen etal.'s (2021) model by demonstrating its usefulness in understanding how parents with a personal ADHD diagnosis experience biographical disruption or cohesion in response to their children's diagnosis. That a child's diagnosis leads parents with ADHD to experience a self-biographical cohesive or disruptive response is a unique and significant finding.

Young adults' experiences of biographical retrogression whilst living with long COVID.

During the early years (2020-2021) of the COVID-19 pandemic, relatively little attention focused on experiences of people with long-lasting symptoms, particularly young adults who were commonly understood to be invulnerable to serious effects of the virus. Drawing on narrative interviews with 15 adults in their twenties and living in the UK when they became ill with long COVID, we explore contextual factors which made their long COVID illness experience, and the wholescale disruption to their lives, challenging. We propose that existing adaptations of the concept of biographical disruption are problematic for this group, and instead suggest that 'biographical retrogression' may more accurately reflect these young adults' experiences. For many of these young adults, their illness occurred at a crucial stage in forming or solidifying (presumed) adult trajectories. Secondly, the recency of long COVID did not allow for comparison with an existing 'grand narrative' of recovery, so the future course of their illness was not just unknown for them as individuals; there was no prognostic map against which to assess their symptoms. Thirdly, the lives of people with long COVID have been disrupted in the context of global societal disruption by the same virus, rendering their experiences both topical yet invisible.

Disruption, discontinuity and a licence to live: Responding to cancer diagnoses.

Although a diagnosis of a life-limiting cancer is likely to evoke emotions, such as fear, panic and anxiety, for some people it can also provide an opportunity to live life differently. This article is based on research undertaken in Aotearoa New Zealand on the topic of exceptional cancer trajectories. Eighty-one participants who had been identified as living with a cancer diagnosis longer than clinically expected were interviewed, along with 25 people identified by some of the participants as supporters in their journey. For some participants the diagnosis provided the opportunity to rethink their lives, to undertake lifestyle and consumption changes, to be culturally adventurous, to take up new skills, to quit work and to change relationships with others. The concepts of biographical disruption and posttraumatic growth are considered in relation to these accounts, and it is argued that the event of a cancer diagnosis can give license for people to breach social norms.

Explanation for symptoms and biographical repair in a clinic for persistent physical symptoms

IntroductionBiographical disruption describes the process by which illness impacts not just on a person's body and their participation in activities, but also on their sense of self. Biographical disruption is often followed by a process of biographical repair in which identity is reconstructed and a new normality is restored. People with persistent physical symptoms (sometimes referred to as medically unexplained symptoms) experience biographical disruption. This can be complicated by lack of explanation and the implication that if the problem is not medical, then it might be the person/psychological. We aimed to examine this tension in people attending a novel “Symptoms Clinic” for people with persistent physical symptoms. MethodsThis study reports an embedded qualitative study in a UK based randomised controlled trial. Data were collected by audio recordings of consultations and semi-structured interviews with patients. We used theoretically informed thematic analysis with regular coding and discussion meetings of the analysis team. This analysis explores the role of intervention components in facilitating biographical repair. ResultsThe lack of acceptable explanation for persistent symptoms acted as a block to biographical repair. In the clinic, multi-layered explanations were offered and negotiated that viewed persistent symptoms as understandable entities rather than as indicators of something still hidden. These explanations allowed study participants to make sense of their symptoms and in turn opened new opportunities for self-management. The result was that participants were able to reframe their symptoms in a way that enabled them to see themselves differently. Even if symptoms had not yet improved, there was a sense of being better. This can be understood as a process of biographical repair. ConclusionExplaining persistent physical symptoms enables biographical repair.

Adapting Amidst Vulnerability: An Interpretative Phenomenological Analysis Study on Gay Men Living With HIV.

HIV represents a "biographical disruption", interrupting the continuity of life and fostering a sense of vulnerability. The transition of HIV into a chronic condition, coupled with extended life expectancy, necessitates significant lifestyle adjustments, making adaptation and navigation through uncertainties essential. Interpretative phenomenological analysis was used to investigate the lived experiences and adaptation processes of gay men in Greece who are living with HIV. Semi-structured interviews were conducted with seven HIV-positive gay men, recruited from two Greek NGOs that support individuals living with HIV. Investigator triangulation was used to interpret textual material, heightening credibility and reducing bias, thereby enhancing the findings' reliability. The analysis identified a superordinate theme, "Being Vulnerable Enough: Negotiating Uncertainties and Adapting in the HIV Experience", which encompasses three themes: "The Moment of Division: Fear, Uncertainty, and Vulnerability after an HIV Diagnosis", "Grief and Negotiation: Navigating Daily Life Through the Lens of Loss", and "Reclaiming Self: Shaping 'My HIV Identity' to Fit on My Terms". The initial shock of HIV diagnosis introduces a sense of vulnerability, with participants confronting fear, despair, and grief over the loss of health and the disruption of their anticipated life flow. Being vulnerable enough enables individuals to adapt to life with HIV by managing uncertainties through creating certainties with small daily decisions, in a non-linear, ongoing process of negotiation and reassessment, without the need to eliminate all uncertainties.

The Emotional Impact of a Cancer Diagnosis: A Qualitative Study of Adolescent and Young Adult Experience.

The biographical disruption that occurs in adolescents and young adults following a cancer diagnosis can affect various important psychosocial domains including relationships with family and friends, sexual development, vocational and educational trajectories, and physical and emotional wellbeing. While there is evidence of the physical impact of cancer during this period, less is known about the impact on emotional wellbeing and especially on the barriers for young people accessing help and support. We aimed to obtain a more in-depth understanding of young people's experiences of their diagnosis, treatment, psychological impact, and range of resources they could or wanted to access for their mental health. We conducted an in-depth qualitative study using semi-structured interviews with 43 young people who had developed cancer aged 16 to 39 years and were either within 6 months of diagnosis or 3-5 years after treatment had ended. Framework analysis identified three themes: the emotional impact of cancer (expressed through anxiety, anger, and fear of recurrence); personal barriers to support through avoidance; and support to improve mental health through mental health services or adolescent and young adult treatment teams. We showed the barriers young people have to access care, particularly participant avoidance of support. Interrupting this process to better support young people and provide them with flexible, adaptable, consistent, long-term psychological support has the potential to improve their quality of life and wellbeing.

‘I’ve never been so stressed in my life’: a qualitative analysis of young adults’ lived experience amidst pandemic restrictions in Prince Edward Island, Canada

ObjectivesThis qualitative study aimed to explore how young adults experienced the COVID-19 pandemic in relation to extensive lockdowns, social isolation and psychosocial distress. Specifically, this research focused on how the...

Renegotiating identity. A Nordic study of adolescent's experiences of living with a parent having heart disease.

To explore adolescents' experiences of having a parent with heart disease. This qualitative study was performed with semi-structured individual interviews. Interviews were conducted with 33 adolescents between 13 and 19 years old, who either had a mother or father with one of these diagnoses: ischemic heart disease, arrhythmia, heart failure, cardiac arrest or heart valve disease. The parent had been ill for at least 6 months and up to 5 years. The study was carried out in Denmark, Norway and Sweden between 2019 and 2022. The analysis was inspired by Reflexive Methodology. Three central themes emerged: Response to parental heart disease; Growing up ahead of time; and Strategies in a changed life situation. For the adolescents, heart disease was experienced as an acute and lethal disease that put their parents' lives in danger. New routines and roles not only changed everyday life within the family but they also enhanced maturity and appreciation of life. To maintain a balance in life, the adolescents pursued normality and sought a safe space to have a normal youthful life. In a period known to be significant for development, life with parental heart disease appeared as a biographical disruption because adolescents renegotiated their identity to manage their new life situation. It is important to help younger family members adapt to parental heart disease by informing them about possible reactions and supporting them in how to adapt to their new life by seeking breaks and normality. No patient or public involvement.

An Autoethnographic Reflection of COVID-19 and/as Biographical Disruption

The COVID-19 pandemic and concomitant measures to mitigate it have exacerbated pre-existing social inequalities and have proven to be major disruptive phenomena at both individual and community levels. People with disabilities and chronic illnesses have been some of the most drastically impacted social groups during the pandemic whose isolation and vulnerabilities have often been compounded in the wake of the massive social upheaval. Through an autoethnographic account of a woman with a physical disability in India who has also survived polio, heart disease, cancer and COVID-19, this article captures some of the complex and conflicting emotions and experiences of a life lived at the intersections of various embodied precarities and demonstrates how a social disaster can itself constitute a biographical disruption.

Biographical continuation: recovery of stroke survivors and their family caregivers in Taiwan.

To explore the experiences pertaining to long-term care services from the perspectives of dyads of stroke survivors and their family caregivers in indigenous and non-indigenous communities. Stroke occurrence is a life-changing event associated with quality of life for stroke survivors and their families, especially those who provide primary support. Indigenous people are more likely to experience a stroke at a younger age and have a higher likelihood of hospitalisation and death due to health disparities. Few studies have investigated family dyads or indigenous populations to understand their experiences of coping with changed body-self and to contextualise their reintegration into communities post-stroke. Ethnographic fieldwork over nine months in 2018-2019 with indigenous, urban-based, and non-indigenous populations, resulting in 48 observations and 24 interviews with 12 dyads in three geo-administrative communities. The post-stroke recovery trajectory is illuminated, delineating the dyads' life transitions from biographical disruption to biographical continuation. The trajectory is shaped by seven states involving four mindsets and three status passages. The four mindsets are sense of loss and worry, sense of interdependence, sense of independence, and wellbeing state. The status passages identified in this study are acceptance, alteration, and identification. A community-based and family-centred long-term care system, aligning with medical healthcare and community resources, underpinned each dyad's biographical continuation by: (1) providing rehabilitation that afforded time and space for recovery adaptation; (2) acknowledging the individuality of family caregivers and helping to alleviate their multitasking; and (3) reintegrating stroke survivors into their communities. Key to determining the quality of recovery for the indigenous participants was their reintegration into their native community and regaining of identity. Therefore, integrating post-stroke care into various care contexts and incorporating indigenous-specific needs into policymaking can support dyads in adapting to their communities.

Biographical disruption, redefinition, and recovery: Illness identities of women with depression and diabetes.

The rich conceptual literature on illness experiences has been based largely on singular diseases/conditions. However, over the last few decades, more complex disease patterns and increased longevity have complicated our understanding of how people experience illness. This study builds upon existing theoretical constructs (e.g. biographical disruption) to more robustly capture the illness experiences of those living with multi-morbid conditions. In-depth interviews, examining the post-diagnostic experiences of women living simultaneously with common somatic (diabetes) and psychiatric (clinical depression) conditions, revealed participants' evolving socially embedded illness identity, as they engaged in (re-)constructing new biographies. Socially contextualized situations shaped and were shaped by their illness identity as they managed social relationships, medication use, and choice of providers. Although diagnosed for years, many continued to have lives in upheaval. While most experienced crumbling self-images and described disrupted biographies, others experienced different trajectories with corresponding illness identities. A new typology emerged, extending Bury's concept of disrupted biographies to encompass redefined, and recovered, biographies, within and across the comorbid conditions.

Process of Maintaining Self in Individuals Living With Systemic Sclerosis: A Grounded Theory Study of American Women.

People with chronic illnesses may struggle to adapt psychologically to the illness experience and have feelings of identity loss, self-diminishment, and biographical disruption. This may limit people's ability to engage in optimal self-management. Systemic sclerosis is a debilitating, stigmatizing, and life-limiting progressive chronic illness with significant disfiguring effects. Little is known about the identity management process in people with disfiguring and debilitating conditions such as systemic sclerosis. The purpose of this study was to generate a grounded theory explicating the process of maintaining a sense of self in people living with systemic sclerosis. Fifteen women with systemic sclerosis were recruited to ensure representation of a range of illness duration and progression. Semi-structured interviews were conducted, transcribed, and analyzed using open, selective, and theoretical coding. A basic social process of "maintaining self" was generated from the data that explained the women's experience of living with systemic sclerosis and how they tried to hold on to their identity. Three core categories were identified. Adapting to changes are the behaviors that participants struggled through to carry on with their everyday lives. Dismantling of self was a distressing internal process where participants lost their sense of self and purpose. Restoring self was a transformative process that allowed participants to rewrite and rebuild their biographies. Findings suggest that the management of identity was important for understanding how people adapt to life with systemic sclerosis. This study can help nurses better understand how to support patients holistically with the management of systemic sclerosis.

The lived experience of patients with left ventricular assist devices: a systematic review of qualitative studies

Abstract Background although the utilization of left ventricular assist devices (LVADs) in heart failure (HF) patients has been increasing, little is known about the patients’ experience of living and managing daily life post LVAD implantation. Knowing more about the patients’ experience would help LVAD nurses establish a less hierarchical and more meaningful therapeutic relationship with their patients, and anticipate the patients’ physical, emotional and social needs post LVAD implantation. Purpose to identify the themes and patterns amongst individuals with HF who have opted for LVAD implantation, as very few studies have looked at the needs of this patient group. Methods a systematic search of PubMed, Scopus, ScienceDirect and Google Scholar in November 2022 yielded 530 research papers from 2011-2022 with keywords: LVAD, left-assist, patient, qualitative. All studies were imported into Covidence, 24 duplicates were removed, and 506 papers were subjected to abstract, title and full-text screening by three researchers independently. Screening resulted in the inclusion of 15 qualitative studies on the experiences of adult patients with implanted LVAD. All studies that were included had conducted qualitative interviews. Each study was scored according to CASP criteria, and no distinction was made between Bridge-To-Transplantation Therapy and Destination Therapy. Results Fifteen [n=15] studies in 7 countries involving 296 individuals (232 patients and 64 informal caregivers) were reviewed. The review of the literature revealed a variety of findings. Data analysis identified seven themes pertaining to the experience of living with LVAD: a) physical and functional dimensions of life [n=7 studies], b) emotional – psychological dimensions [n=10 studies], c) hope and optimism [n=5 studies] d) social aspects and relations to others [n=6 studies], e) adaptation and coping mechanisms [n=6 studies], f) receiving support from others as part of holistic care [n=3 studies], and g) liminality and ambivalence [n=3 studies]. Conclusions LVAD patients experience a life with functional limitations, fear, lifestyle changes, frustration, with "up and down-ness", that requires them to resort to a repertoire of adaptation and coping mechanisms, hope, and support from family and services. LVAD implantation introduces them to a new embodied experience of living with stigma, but also to a feeling that they have been "saved". Somewhere along their "LVAD trajectory", they experience loss of identity and "liminality", and they go through what is also known as "biographical disruption". Professionals in LVAD and Heart Failure services would be better suited to support patients and their caregivers through this journey of life transformation and ambivalence, if they were more aware of the aforementioned findings. This review sheds light on the experience of a very unique group of patients, who need specialist and needs-specific care in this post-modernism biotechnical era.PRISMA Flow DiagramTable of the included studies

A casemix classification for those receiving specialist palliative care during their last year of life across England: the C-CHANGE research programme

A casemix classification for those receiving specialist palliative care during their last year of life across England: the C-CHANGE research programme

The care trajectories leading to emergency dialysis start: a qualitative study

Abstract Introduction Emergency dialysis start (EDS) is an important issue to understand and tackle in Chronic Kidney Disease (CKD) care. Late referral, absent previous nephrology care and higher comorbidity scores have been associated with EDS. However, how those factors happen and contribute to EDS remains unexplored. We conducted a qualitative study in France to identify and describe the mechanisms that shape the trajectories that lead to EDS, using patients, GPs and nephrologists perspectives. Methods Three groups of participants were recruited in Brittany, north-west France: Patients who started dialysis in emergency between 2017 and 2019, GPs and nephrologists. Maximum variation sampling approach was used based on patients’ socio-economic profiles and GPs’ and nephrologists’ years and settings of practice. Semi-structured interviews were conducted between 2017 and 2020. A crossed thematic analysis between the 3 groups of transcripts was performed, informing how EDS trajectories come to be. Results Twenty patients, 12 GPs and 18 nephrologists were interviewed. Five themes were identified: 1) Learning about dialysis, 2) Dialysis and nephrology care representations: a) an unacceptable biographical disruption, b) a dreadful invasive machinery, c) a straw that breaks the camel's back, 3) The gap between the “illness” perceived and the “disease” treated, 4) Slipping through the primary care prevention net, 5) the unavoidable unpredictability of CKD course. Conclusions This study shows how EDS is, in part, the results of an interplay between patients’ constructed representations of dialysis, relation with the medical sphere and CKD physiopathology. The results suggests a need for evaluation of kidney replacement therapy education programs and reinforcement of psychological care. Finally, results support ambitious mass prevention campaign focused on kidney health to counter the persistent negative representation of dialysis and seal off prevention cracks. Key messages • Emergency dialysis start is the result of an interplay between patients’ constructed representations of dialysis, relation with the medical sphere and CKD physiopathology. • Evaluation of kidney replacement therapy education programs and reinforcement of psychological care as well as an ambitious prevention campaign focused on kidney health could contribute to reduce EDS.

Journey for a cure: Illness narratives of obstetric fistula survivors in North Central Nigeria.

Obstetric fistula is a life transforming event resulting in embodied biographical disruption. Survivors suffer myriad long-term physical and emotional consequences. This paper is an account of a narrative inquiry, conducted with 15 fistula survivors in North-central, Nigeria, who described how their identities had been transformed by their condition. A narrative therapeutic approach, using Frank's 'chaos, restitution and quest' typology, was used to map their recovery narratives. 'Chaos', described by Frank as the opposite of restitution, dominated, with women losing hope of recovery. Women's shift towards 'restitution' began with treatment, but inadequate health-care access often delayed this process. In their quest narratives, women's life and identify changes enabled them to derive meaning from their experience of obstetric fistula within the context of their own lives. The findings highlight socio-structural factors raising the risk of obstetric fistula, which in turn causes biographical disruption and hampers sufferers' treatment and recovery. Rehabilitation should include income-generating skills to bring succour to survivors, particularly those whose incontinence persists after repairs.