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Chronic Illness as Biographical Disruption
Abstract
The paper is based on semi-structured interviews with a series of rheumatoid arthritis patients. Chronic illness is conceptualised as a particular type of disruptive event. This disruption highlights the resources (cognitive and material) available to individuals, modes of explanation for pain and suffering, continuities and discontinuities between professional and lay thought, and sources of variation in experience.
... A person is still sick before they are diagnosed and I hope that in the future, there will be more societal acceptance towards the undiagnosed but unwell populations. Cheshire et al. (2021: 300) stated that some theorists, 'including Parsons himself, argue[d] that the theory highlights responsibility of the chronically ill person to minimise the effects of their health condition (rather than recover from it), by engaging with medical advice/treatment, displaying motivation to recover, and not "give in" to the illness (Varul, 2010)'; ' Bury (1982) proposes that a chronically ill individual may only have periods where they occupy the sick role due to, for example, symptom flare-ups or surgery' (Bury, 1982). In my experience, there can be a stigma attached to not being perceived to be displaying enough motivation or effort to recover and I have had time in and out of the sick role since puberty. ...
... A person is still sick before they are diagnosed and I hope that in the future, there will be more societal acceptance towards the undiagnosed but unwell populations. Cheshire et al. (2021: 300) stated that some theorists, 'including Parsons himself, argue[d] that the theory highlights responsibility of the chronically ill person to minimise the effects of their health condition (rather than recover from it), by engaging with medical advice/treatment, displaying motivation to recover, and not "give in" to the illness (Varul, 2010)'; ' Bury (1982) proposes that a chronically ill individual may only have periods where they occupy the sick role due to, for example, symptom flare-ups or surgery' (Bury, 1982). In my experience, there can be a stigma attached to not being perceived to be displaying enough motivation or effort to recover and I have had time in and out of the sick role since puberty. ...
... She explained that 'Long Covid is a debilitating and devastating chronic illness' causing 'loss of employment, inability to parent your children, breakdown of marriages, and destruction of your identity and life as you previously knew it' (O'Connor, 2024: 9). This links to Bury's (1982) concept of 'biographical disruption' , which is 'the influence of a significant, sudden event or events on the course of an individual's life that cardinally changes its direction and plans' (in Pranka, 2018: 1). Illnesses can break 'an individual's social and cultural experience by threatening [their] self-identity' (Pranka, 2018). ...
Postural orthostatic Tachycardia Syndrome (PoTS), sometimes also written as ‘POTS’, is a form of dysautonomia (dysfunction of the autonomic nervous system) and orthostatic intolerance (which causes symptoms to be worsened when standing). This paper explores the extant literature on the lived experiences of those living with PoTS in relation to interactions between patients and healthcare providers as well as interactions at the level of the individual between PoTSies and those around them. My title contains the word ‘salty’ because it can be used to describe the feeling of being frustrated, while also reflecting a specific dietary change recommended to many (but not all) PoTS patients when they are told to consume additional sodium to minimise symptoms. COVID-19 is thought to have led to an increased prevalence of PoTS so this topic is particularly relevant to contemporary discussions and debates. In this sociological article, I refer not only to existing research on the lived experiences of having PoTS but also that of other chronic illnesses when relevant. The following themes are explored through auto/biographical and theoretical analysis: Undiagnosed and Invalidated; (In)Visible; Impacts of Diagnosis; Recovery and Expectations; Community. Reflecting auto/biographically, I have included analysis of interactions related to my lived experiences of presyncope, COVID-19 and dysautonomia, as I have been diagnosed with PoTS myself, which is thought to have been significantly exacerbated by the COVID-19 virus. This research is sociological, rather than medical or psychological, and conclusions are drawn about what is known so far about the lived experiences of living with PoTS, as well as discussion about what remains unknown, as there is currently a paucity of research on the lived experiences of individuals with PoTS and its comorbidities.
... According to Frank (2013), illness is a crisis of the self as it significantly interrupts one's life. As Bury (1982) notes, illness can disrupt our life story by introducing significant changes in daily life, relationships, and overall sense of self (Bury, 1982). However, our findings emphasize how the young women's illness experiences are entwined with other big and small disruptions in their lives. ...
... According to Frank (2013), illness is a crisis of the self as it significantly interrupts one's life. As Bury (1982) notes, illness can disrupt our life story by introducing significant changes in daily life, relationships, and overall sense of self (Bury, 1982). However, our findings emphasize how the young women's illness experiences are entwined with other big and small disruptions in their lives. ...
... This refers equally to analogue and to digital health care. As stressed by Bury (1982), chronic illness involves a recognition of the worlds of pain and suffering and it is just as vital for healthcare designers as for healthcare professionals to acknowledge the sensitivity of the context. Because sensations like pain, and the anticipation of an unknown future tend to induce mental suffering we, in this exploratory study, used mental health applications as probes into the affective design space for RheumaBuddy with promising results -the apps were, indeed, able to affectively impact the participants either by increasing their sense of calm in the cases of Aura, Headspace and Resilio, or by positively changing moods as Woebot did. ...
... Em estudos posteriores da sociologia médica e da antropologia médica, a perspectiva do paciente tornou-se um valioso objeto de estudo por si só e também uma forma de melhorar o trabalho dos médicos "complementando" o conhecimento biomédico. Por exemplo, experiências de doença, sofrimento e morte (Kleinman 1988) foram estudadas e interpretadas de várias maneiras: como rupturas biográficas (Bury 1982(Bury , 1991S. J. Williams 2000), ou como pontos de virada na vida das pessoas que adoecem. ...
A "perspectiva do paciente" serve como uma ferramenta analítica para apresentar os pacientes como sujeitos com conhecimento na pesquisa, e não como objetos conhecidos pela medicina. Este artigo analisa os problemas encontrados com o conceito da perspectiva do paciente aplicado aos cuidados de saúde mental a longo prazo. Um problema é que "ter uma perspectiva" requer uma percepção de si mesmo como um indivíduo além da capacidade de representar sua situação individual na linguagem falada; isto exclui da pesquisa os pacientes que não se expressam verbalmente. Outro problema é que a ideia de "falar" como uma representação do mundo ignora o fato de que a fala também é uma performance em contexto: requer, pelo menos, a capacidade de lidar com uma situação de entrevista. Para pensar em formas alternativas de incluir os pacientes como sujeitos na pesquisa, desenvolvo uma abordagem que toma esta performatividade como um ponto de partida. Analisando situações práticas e atividades, argumento que os pacientes colocam em cena suas apreciações, dando a conhecer o que eles gostam ou não gostam por meios verbais ou não verbais em um determinado ambiente material, em situações que são co-produzidas por outros. Assim, a subjetividade está ligada a situações e interações, ao invés de ligar-se apenas às características individuais; a "posições do paciente", em vez de as "perspectivas do paciente".
... However, during the pandemic, many had to navigate this diagnostic process alone, without the social support and resources of others to help them comprehend information provided. When people are given a cancer diagnosis they transition from this prediagnosis liminality, into a new realm of patienthood [26], a time at which their sense of self may be disrupted [27], as their mortality is brought into question. At this point, concerns and uncertainties about meaning, identity and the future abound, making it difficult to retain information, or actively engage in decision-making processes. ...
Introduction
The Covid‐19 pandemic dramatically altered the way cancer care services were accessed and delivered, including for colorectal cancer (CRC). In the United Kingdom, patients were discouraged from presenting in primary care, many consultations took place remotely, investigative procedures and screening programmes were temporarily suspended, and fewer operations and treatments were delivered. People had to face the practical consequences of having cancer during a pandemic and navigate never before seen pathways, often alone. We examined the experience of being diagnosed and treated for CRC during the pandemic, and the implications of this on people's cancer journeys.
Methods
Semi‐structured interviews were undertaken with people diagnosed with CRC during the Covid‐19 pandemic (January 2020–May 2021), in the North East of England. An iterative topic guide was used during interviews, which took place remotely (telephone or Zoom), were audio recorded, pseudo‐anonymised and transcribed. Initial transcripts were independently coded by two researchers, and a code ‘bank’ developed for application across transcripts. Development of themes and overarching analytical constructs was undertaken collaboratively by the research team.
Results
Interviews were conducted with 19 participants, analysed and four key themes identified: (1) The relative threats of Covid‐19 and Cancer were not comparable, with cancer seen as posing a far greater risk than Covid‐19; (2) Remote consultations were problematic, affecting patients' abilities to build rapport and trust with clinicians, assess nonverbal communication, and feel able to disclose, comprehend and retain information; (3) Stoma follow‐up care was seen to be lacking, with long wait times for stoma reversal experienced by some; Finally, (4) Being alone during consultations negatively impacted some peoples' abilities to absorb information, and left them without the support of loved ones at an emotionally vulnerable time. However, some participants preferred being alone at certain points in their pathways, including receiving a diagnosis, and most frequently when receiving in‐patient treatment.
Conclusion
Being alone brought unexpected benefits, absolving people from undertaking emotions work for others, and instead focus on their recovery, however, remote consultations negatively impacted patients' experiences. This study highlights the complex benefits and burdens of pandemic‐located cancer journeys, including how these shifted at different points across cancer pathways.
Patient or Public Contribution
Lorraine Angell, a cancer survivor, has been central to this study from idea conception, contributing to: development of study focus and design; securing funding; production of patient‐facing materials; development of interview topic guides; analysis and interpretation of data; and drafting of key findings and manuscripts.
... When a person acquires a brain injury, something happens not only to the brain and body, but also the anticipated future. Experiencing an ABI can thus be conceptualized as a "critical event" that disrupts the structure of everyday life, The sociologist Bury refers to this event as a form of biographical disruption (23). In other words, an unexpected interruption of an otherwise expected normal course of life. ...
Background
There has been an increasing interest in the concept of hope within the field of brain injury rehabilitation. Existing reviews have nevertheless focused on stroke, leaving out the broad population of people with acquired brain injury (ABI). Furthermore a majority of the included studies in those reviews excluded the subgroup of people with communication difficulties, thus primarily giving voice to a select group of people with ABI.
Methods
A qualitative systematic review was conducted with the purpose of systematically reviewing and thematically synthesise findings about hope as experienced by adults with ABI in a rehabilitation or recovery process. The search strategy included peer-reviewed qualitative studies published after 2000 in English or Scandinavian languages. Searches of EBSCO databases incorporating CINAHL, MEDLINE, and PsycINFO were conducted together with SocINDEX, Social Work Abstracts, Eric and Web of Science. Ten qualitative studies were included, and the Critical Appraisal Skills Program (CASP) was used for assessing the quality and relevance of the ten studies. Qualitative findings were synthesized using Thomas and Harden's methodology.
Results
Through a thematic synthesis eleven subthemes were identified relating to experiences of hope. These were grouped into four analytical themes: (1) hope a two folded phenomenon; (2) time and temporality; (3) progress, goals and visibility and (4) the alliance; a balancing act requiring good communication skills.
Conclusion
This review has shown that even though hope has both a positive and negative side to it, it is necessary as a driving force for people with ABI in terms of supporting them to keep going and not give up. Rehabilitation professionals are advised to embrace the ambiguity of hope, customizing the support of hope to each person with ABI. Attention is needed on how to make progress visible for persons with ABI during their rehabilitation process just as rehabilitation professionals should acknowledge the alliance with the person with ABI as a core component of rehabilitation. This requires a focus on professionals' communication skills if hope promoting relationships between professionals and persons with ABI are to be achieved.
Introduction
Many people experience persistent symptoms for more than 12 weeks following SARS‐CoV‐2 infection, which is known as post‐COVID‐19 condition (PCS) or Long COVID (LC). PCS can impair people's quality of life and daily functioning. However, there is a lack of in‐depth research exploring the PCS patient journey, as well as gendered aspects of patients' experiences.
Methods
Nineteen semi‐structured qualitative interviews were conducted with people living with PCS in the United Kingdom (13 women, 6 men). Interviews were transcribed verbatim and analysed inductively using reflexive thematic analysis.
Results
Five main themes were identified: ‘Symptom dismissal’, ‘Lack of information and support’, ‘Life before and after Long COVID’, ‘Psychological impact’ and ‘Acceptance’. A shift overtime to self‐management of symptoms was evident. These themes represent different stages of patients' PCS journey. Narratives indicated that women highlighted dismissal by healthcare professionals (HCPs), which was not as prominent in men's narratives. In addition, women went into more detail about the psychological impact of PCS compared to men.
Conclusion
Women with PCS reported symptom dismissal by HCPs, which may have delayed their diagnosis and negatively affected their well‐being. We were not able to explore the experiences of people from non‐conforming gender groups. Raising awareness of these issues among HCPs, particularly general practitioners, could improve patient care in PCS.
Patient or Public Contribution
Patient and public involvement consisted of people who took part in the interviews and commented on the themes' interpretation and study conclusions.
Introduction
Hearing loss is a chronic health condition that rises sharply with age. The way people respond to and cope with health conditions is influenced by their capacity to perform illness and treatment‐related work. The aim was to explore the cumulative burdens of living with hearing loss and the resources mobilised to ease the burdens.
Methods
A qualitative design was used with semi‐structured interviews (online or in‐person) with participants recruited through audiology services and nonclinical services, such as lip‐reading classes. Forty‐six participants with hearing loss aged between 16 and 96 years were interviewed. An abductive approach, informed by May et al.'s burden of treatment theory, was used to analyse the data.
Results
The illness burden involved participants working to make sense of their hearing loss, engaging in emotional work in response to changes in sound, social interactions and identity and coping with the daily frustrations required to communicate with others. Abandonment and uncertainty characterised the treatment burden; participants engaged in emotional work to adjust to hearing technology and deal with the uncertainty of how their hearing might progress. To ameliorate the burdens, participants drew on internal resources (psychological, health literacy, cognitive) and external resources (social support, financial, information, technology).
Conclusions
The workload of hearing loss appears largely devolved to the patient and is not always visible. Our work indicates the need to widen approaches in audiological care through the implementation of lifeworld‐led care, family‐centred care and peer support to build support for those with hearing loss.
Patient or Public Contribution
We developed the project in consultation with members of the public who have lived experience of hearing loss recruited through Aston University and volunteer links to audiology services. We also consulted people more likely to be affected by hearing loss adults including adults with learning disabilities, older adults in residential care and people from South Asia (Bangladeshi, Indian and Pakistani communities). These individuals commented on the study aims, interview schedule and participant recruitment practices. One of our co‐authors (expert by experience) contributed to the development and interpretation of themes and preparation of the final manuscript.
Scholars have shown how speakers are inclined to discursively position themselves as ‘ordinary’ in order to claim and benefit from membership in a socially unmarked category, and that the effect of ‘being ordinary’ is an effortful communicative achievement (e.g. Sacks 1984). This study re-examines and extends such insight by focusing on socially marked individuals—people with disabilities—and considers the effect of inhabiting a nonnormative body has on the semiotic production of self as ordinary. The multimodal self-presentation of Nikki Lilly, a popular disabled YouTuber, showcases the tension between inhabiting a physically anomalous body and projecting ‘an average teenager’ persona. The analysis of the vlogger's YouTube and Instagram posts shows that resignifying the nonnormative body and self as symbolically unmarked hinges on recruiting hypernormative gendered resources. I argue that by exaggerating normality, Nikki Lilly's recognized ‘ordinary’ self-presentation enunciates normalcy as an illusory imperative and materializes as subversive the performance of disability. (Nikki Lilly, embodiment, multimodality, presentational media, disability, ordinariness, normativity)*
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