Chronic illness as cultural disruption: The impact of chronic illness on religious and cultural practice.

The relationship between religion and health tends to be framed positively. Religion has been found to act as a coping mechanism and source of support in times of ill health. In this paper, we focus on the disruptive effect of chronic illness on religious practice and cultural engagement. Drawing on interviews with ethnic minority adults with end-stage kidney disease, who also identify as religious, we introduce the concept 'cultural disruption'. While religious practice and belief was found to provide strength and comfort we also found that chronic illness had a disruptive impact on religious and cultural practice that participants attempted to manage. To highlight the potential disruptive effect of chronic illness on religious faith and cultural engagement we identify three elements of cultural disruption-disruption to religious practice, disruption to sense of self and identity and disruption to wellbeing. We conclude by suggesting that understanding and accounting for the potential of cultural disruption when diagnosing, treating and supporting people with chronic illness offers an alternative entry point to the life-worlds of patients who identify as religious and the things that are important to them.

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.

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 et al.'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.

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

Introduction: Biographical 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. Methods: This 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. Results: The 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. Conclusion: Explaining persistent physical symptoms enables biographical repair.

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.

Biographical Renewal and its Facilitators in Cancer Survivorship: A Conceptual Paper.

Experiencing cancer impinges life in several ways. Research on the biographical implications of cancer has focused on its disruptive nature. Biographical renewal is not given full attention despite existing literature on positive transformations after cancer. This conceptual paper presents an account of biographical renewal in the milieu of cancer survivorship. Further, we discussed some crucial facilitators that promote the biographical renewal. Caregivers may consider biographical renewal as a substantially new goal in the survivorship care plan to improve patients' quality of life. The discussion is designed to foster an understanding of biographical renewal for the psychosocial practice by professionals with cancer patients, survivors, and their caregivers - formal and informal, to provide comprehensive care during cancer survivorship. Implications for palliative care are also discussed.

Mpox Illness Narratives: Stigmatising Care and Recovery During and After an Emergency Outbreak.

In May 2022, a global outbreak of mpox (formerly monkeypox virus) affected thousands of mainly gay and bisexual men. Mpox is usually a time-limited illness that can involve fever, pain, and skin lesions, but may require hospitalisation. There is scant research into the firsthand experiences of people affected by mpox, including experiences of symptoms, healthcare, and recovery. This study considers the different illness narratives of people who experienced mpox in Australia in 2022. In-depth interviews and 6-month follow-up interviews were conducted with 16 people, including 13 people diagnosed with mpox and three close contacts. All participants were cisgender gay or bisexual men living in Australia. Participants' accounts described minor to severe periods of sickness, negative and stigmatising experiences engaging with healthcare, and some participants experienced long-term effects on their sexual well-being and complications from mpox. The emergency outbreak context meant that mpox was highly distressing, making it difficult to manage and producing varying forms of disruption to everyday life. Mpox was narrated as disruptive in different ways: as a minor interruption to holiday plans, a prolonged period of poor health, or a biographically disruptive event prompting a re-evaluation of sexual values and health. This analysis demonstrates that an unfamiliar emergent disease outbreak related to sexual practices and sociality can reconfigure personal life and sexual well-being, suggesting a need to focus on providing quality patient care in outbreaks of mpox and other infectious diseases.

Disrupted biographies and gendered identities: A qualitative study exploring sexuality and blood cancer.

PURPOSE: This study examines how blood cancer impacts patients' sexuality and sense of gendered identity. METHODS: An interpretive epistemological framework necessitated a qualitative study design. Participants (6 male and 6 female), recruited from a hospital Haematology department in a large Northern English City, took part in semi-structured in-depth interviews to gather rich data about their subjective experiences. RESULTS: A key theme from the qualitative data was a sense of disruption in relation to several aspects of their gendered identities and sexual life. Participants explained disruption to their sexual function and sexual sense of self. They narrated concerns about future imagined relationships. The emotional burden of sexuality related concerns was strongly articulated. A gendered perspective enabled the similarities and differences between men and women to be explored. CONCLUSION: This study, drawing on rich qualitative data, documents the sexuality concerns of blood cancer patients; for some such concerns arise many years post treatment. The findings highlight the need for gender appropriate care around sexuality which should continue to be accessible well after diagnosis and treatment phases have ceased.

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.

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.

Biographical Reinvention: An Asset-Based Approach to Understanding the World of Men Living with HIV in Indonesia.

HIV diagnosis and management have often caused disruption to the everyday life and imagined futures of people living with HIV, both at individual and social levels. This disruption has been conceptualised, in a rather dystopian way, as 'biographical disruption'. This paper explores whether or not biographical disruption of living with HIV encourages men living with HIV (MLHIV; n = 40) in Yogyakarta and Belu, Indonesia, to reinvent their sense of self and future over time using internal and external assets. Our analysis uses the concepts of additive and subtractive resilience strategies, and we show how, rather than having a purely disrupted biography, participants talked about their experiences of 'biographical reinvention'. Study participants were recruited using the snowball sampling technique, beginning with two HIV clinics as the settings. Data were collected using one-on-one in-depth interviews, and a qualitative framework analysis was used to guide step-by-step data analysis. The findings showed that, despite the disruptions in their everyday lives (i.e., mental health condition, work, activities, social relationships, etc.) following the HIV diagnosis and management, MLHIV in our study managed to utilise their internal assets or traits (i.e., hope, optimism, resilience) and mobilised external resources (i.e., support from families, friends and healthcare professionals) to cope with the disruptions. An interweaving of these internal assets and external resources enabled them to take on new activities and roles (additive resilience strategies) and give up health compromising behaviours (subtractive resilience strategies). These were effective for most MLHIV in our study, not only to cope with the HIV repercussions and improve their physical and mental health conditions, but to think or work on a 'reinvented' biography which encompassed resilience, hope and optimism for better health, life and future. The findings indicate the need for HIV interventions and healthcare systems that provide appropriate support for the development and maintenance of internal assets of PLHIV to enable them to cope with the repercussions of HIV and work on a 'reinvented' biography.

The Impact of Cybervictimization on the Self-Management of Chronic Conditions: Lived Experiences.

BACKGROUND: Cybervictimization of people with long-term conditions is a disturbing phenomenon with a documented impact on health and well-being. These experiences are primarily examined using quantitative methods, focusing on children and young people. However, research centered on the cybervictimization of adults with chronic conditions is scarce, with limited qualitative input from the victims as experts in their own experiences. OBJECTIVE: This study aims to understand the impact of cybervictimization on the self-management of long-term conditions among adults with chronic conditions and disabilities in the United Kingdom. METHODS: This paper reports the findings from the qualitative phase of a phenomenologically informed mixed methods study. The biographical disruption concept was used to conceptualize the study. In-depth semistructured interviews were conducted with 13 participants with chronic conditions who experienced cybervictimization. A codebook was developed, and a zigzag approach to thematic analysis was used to define and refine themes. Ethical considerations and risk assessment were ongoing during the research process because of the sensitivity of the topic and cases of harassment. RESULTS: Cybervictimization has direct and indirect impacts on the self-management of chronic conditions. This impact was verified across 6 overarching themes that emerged from this study. First, biomedical events included overall health deterioration because of existing conditions, new diagnoses, and subjective physical complaints. Second, the impact on mental health was perceived through psychological consequences and psychiatric disorders that developed after or during this traumatic experience. Third, the multilevel impact theme focused on disrupting the strategies for coping with health conditions and involved unplanned changes to victims' health management priorities. Fourth, the impact of complexity reflected the perceived uniqueness in each case, intersectionality, struggle to obtain formal support, and subsequent health complications. Fifth, social network involvement comprised the effects of social isolation, victim blaming, and deception. Finally, the disability discrimination theme focused on prejudice, issues on inclusion, and hostility in society, with subsequent effects on well-being. CONCLUSIONS: People with long-term conditions experienced different forms of cybervictimization, all disruptive with various effects on health. Disability discrimination was a prominent finding to be further investigated. This paper reports the impact as themes to guide further research and practice, with the recognition that long-term conditions and impairments are not a homogeneous group. Despite the devastating consequences, there are positive points that strengthen potential interventions. Awareness-raising campaigns, training of support channels, and multidisciplinary research are recommended to tackle this issue and initiate change.

Biographical dialectics: The ongoing and creative problem solving required to negotiate the biographical disruption of chronic illness.

Here we propose the term 'biographical dialectics' as a sister term to 'biographical disruption' to capture the ongoing problem solving that characterises the lives of many people living with life limiting chronic illnesses. The paper is based on the experiences of 35 adults with end-stage kidney disease (ESKD) in receipt of haemodialysis. Photovoice and semi-structured interviews showed that ESKD and the use of haemodialysis was widely agreed to be biographically disruptive. In talking about and showing disruption through photographs the participants' ongoing problem solving was universal across their diverse experiences. 'Biographical disruption' and Hegalian dialectical logic, are drawn on to make sense of these actions and to further understand the personal and disruptive experience of chronic illness. Based on this, 'biographical dialectics' captures the work that is required to account for and manage the enduring and biographical impact of chronic illness that follows the initial disruption of diagnosis and continues as life progresses.

Getting back to normal? Identity and role disruptions among adults with Long COVID.

Long COVID is a novel chronic illness with a variety of symptoms that people who have labelled themselves 'long-haulers' experience for an extended duration following a COVID-19 infection. We draw on in-depth interviews conducted in March-April 2021 with 20 working-aged adults in the U.S. who self-identified as long-haulers to understand the consequences for identities. The results demonstrate that Long COVID has important consequences for identities and sense of self. Long-haulers described experiencing three stages of biographical disruptions: realising their illness experience as misaligned with sense of self and embodied, age-based expectations; facing challenges to identities and changes in social roles; and reconciling illness and identity in the context of an uncertain prognosis. It remains unclear how long-haulers will resolve biographical disruptions and identity conflicts, especially as scientific insights about this novel condition emerge. Such outcomes may depend largely on whether Long COVID remains a contested illness or medical knowledge progresses to improve their quality of life. For now, healthcare providers may approach Long COVID holistically to address the identity disruptions that long-haulers face as they manage the consequences of this chronic illness.

HIV Diagnosis as Both Biographical Disruption and Biographical Reinforcement: Experiences of HIV Diagnoses Among Recently Diagnosed People Living With HIV.

Despite the potential for HIV treatments to transform the health needs of people living with HIV, receiving a positive HIV diagnosis can be a difficult experience and feelings of shock, distress and concerns for the future are commonly reported. Drawing on Michael Bury's conceptualisation of 'biographical disruption', we utilised semi-structured interviews to explore experiences of HIV diagnoses among 34 people diagnosed with HIV between 2016 and 2020 and living in Australia. Interviews were conducted between January 2018 and August 2021. Despite significant advances in biomedical HIV treatments and prevention, participants commonly experienced HIV diagnosis as emotionally challenging. For those with limited HIV awareness, HIV was commonly understood as a likely fatal condition. For some participants, receiving a positive diagnosis also engendered a degree of uncertainty as to their anticipated life trajectory, particularly its impact on future sexual and romantic relationships, options for starting a family and migration opportunities. For some gay and bisexual male participants, receiving a positive diagnosis almost confirmed a life trajectory that they had worked to avoid and their own sometimes-negative attitudes toward people living with HIV were internalised, making adjusting to diagnosis more complex. While all participants reported challenges in adjusting to an HIV diagnosis, some ultimately came to experience living with HIV as bringing about unexpected and welcome changes to their lives. Our findings highlight the complex and intersecting medical, social and emotional needs of people living with HIV when receiving and adjusting to a positive HIV diagnosis.

Transition back to work after mild TBI: A qualitative study.

BACKGROUND: While many persons who sustain a mild traumatic brain injury (MTBI) can resume work shortly after their injury, some experience persisting symptoms leading to longer-term sickness absence. In-depth knowledge about how these persons experience the return to work (RTW) process is needed. AIMS: To explore how persons with MTBI experience the process of returning to ordinary competitive work after a prolonged period of sickness absence. MATERIAL AND METHODS: Semi-structured interviews were conducted with six persons (four women) approximately 12 months after sustaining an MTBI. Data were analysed using a stepwise-deductive inductive method. RESULTS: When starting work the participants experienced a crisis. They described the importance of making the actual decision to RTW. Being present at the workplace was significant. In the process of increased workload, they expressed having challenges related to time perception and capacity restrictions. The importance of being seen and valued was emphasised. When reintegrated into the workplace revaluing work tasks and priorities shaped the RTW process as well as a further professional career. CONCLUSIONS AND SIGNIFICANCE: The process of RTW contained the experience of unpredictability and incompatibility with own identity and performance. Working had an impact on social participation, self-worth, daily structure, as well as reconstructing occupational biography.

Managing disruption at a distance: Unequal experiences of people living with long-term conditions during the COVID-19 pandemic.

The COVID-19 pandemic and 'lockdown' restrictions have affected people's health and wellbeing globally. Those who are clinically vulnerable to COVID-19 mortality due to living with long term conditions (LTCs) are at greater risk of negative impacts on their health and wellbeing, and of disruption in management of their LTCs. This study explores how people with LTCs managed their health and wellbeing under social distancing restrictions and self-isolation during the first wave of the COVID-19 pandemic, and examines why some people were more able to manage than others. Interviews were conducted between May and July 2020 with people (n = 44) living in North East England, who had one or more LTCs and were recruited via a social prescribing intervention. Data were analysed using a social constructivist thematic analysis. We present our analysis of the possibilities afforded to people to manage the impacts of lockdown on their health and wellbeing. We find that while some people deployed a range of capitals and/or etched out 'tactics' to make life 'habitable', others experienced 'zones of impossibility' requiring that they rely on contingent events or formal support. Our analysis highlights inequalities amongst people with LTCs, particularly regarding access to and deployment of important resources for health and wellbeing under COVID-19 social distancing restrictions, including outdoor space or greenspace, exercise and social connection. The study is novel in showing the mechanisms for coping with a significant period of disruption in the life-course whilst highlighting that although resilience was common in people with LTCs, this was sometimes at detrimental costs to themselves.

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 rehabilitationHip 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.

Lived Experience of Hereditary Chronic Pancreatitis - A Qualitative Interview Study.

OBJECTIVES: Hereditary chronic pancreatitis is a rare condition characterized by intermittent acute episodes of pancreatitis and long-term impairment of pancreatic functions. However, the subjective perspective of individuals affected by hereditary chronic pancreatitis has been little studied. This qualitative study investigates the experience of hereditary chronic pancreatitis patients and their relatives because the awareness of the needs of those affected is an essential component of a patient-centered management of chronic conditions. METHODS: Semi-structured qualitative interviews were conducted with hereditary chronic pancreatitis patients and their relatives. Data were analysed using qualitative content analysis. The concepts of 'biographical contingency,' 'biographical disruption' and the 'shifting perspectives model' served as theoretical frameworks. RESULTS: A total of 24 participants (17 patients, 7 relatives) were interviewed individually. Four main themes were identified: (1) The unpredictable clinical course of hereditary chronic pancreatitis; (2) hereditary chronic pancreatitis as a devastating experience; (3) hereditary chronic pancreatitis as part of a normal life; and (4) being reduced to hereditary chronic pancreatitis. DISCUSSION: The 'shifting perspectives model' of chronic illness covers the four dimensions adequately and can serve as a theoretical model to explain hereditary chronic pancreatitis patients' experience. A better understanding of the patients and their families' experience and the shifting character of hereditary chronic pancreatitis can help healthcare professionals to tailor the care to meet the needs of those affected.