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By nature, autofiction texts often present a strong connection between the story and the external context in which it has been created. This relationship is often represented through the paratext. ...

The purpose of the present study was to learn about the experiences of parents of children diagnosed with renal failure at different stages of the disease in order to get closer to the process they carry out as caregivers. Semi-structured interviews were conducted with 12 parents and analyzed using interpretative phenomenological analysis method. Data analysis revealed two axes: spatial and temporal. The present article focuses on the temporal axis comprised of diagnosis, coping, and remission. These phases are discussed according to Frank’s illness narratives of chaos, quest, and restitution, representing stages in the sequence people undergo while coping with a disease. However, in the case of incurable diseases, such as end-stage renal disease, when there is no restitution and regression in the medical condition is followed by chaos, we suggest a new narrative structure, the Sisyphean Narrative, to symbolize the recurring nature of struggling with the disease.

Humans are inherent storytellers that in turn shapes our identity. The tendency to talk about health and illness is called ‘illness narratives.’ Most research on illness narratives is generated fro...

This article is a discussion between two former colleagues and longstanding friends about the lived experience of illness and disability. In January 2013, Kirsten Harley, a promising early career sociologist was diagnosed with motor neurone disease (MND), a degenerative neurological condition with a typical life expectancy of 2–3 years. In this article, which is part interview and part shared reflection, we consider how Kirsten’s knowledge of sociology has shaped her responses to the illness. We ‘discuss’ the process of meaning making, health system navigation, interactions with health professionals, advocacy, becoming a ‘passive activist’, the role of technology and what we, as sociologists, might learn from a life so dramatically changed.

Despite available guidelines for disclosure of HIV status to children, most children living with HIV are unaware of their diagnosis. We sought to characterize the concepts of illness and treatment among children living with HIV who do not know their status. As part of the Sankofa trial we interviewed 435 children aged 6-18 enrolled in clinical care at pediatric HIV clinics at two teaching hospitals in Ghana. Theoretic thematic analysis generated themes among responses. The children believe they come to the clinic to collect medication, to address specific symptoms, to prevent and treat 'sickness', or as part of their routine. Most children learned of their 'illness' from a family member. A majority (73.5%) of children had never talked about their 'illness' with anyone else; many feared consequences. Children living with HIV who do not know their status exhibit signs of anticipated and internalized stigma regarding their unknown 'illness.' An understanding of the way children conceptualize their illness has implications for health promotion and the provision of appropriate information to children living with HIV.ClinicalTrials.gov Identifier NCT01701635.A pesar de las pautas disponibles para la divulgación del estado del VIH a los niños, la mayoría de los niños que viven con el VIH desconocen su diagnóstico. Intentamos describir los conceptos de enfermedad y tratamiento entre los niños que viven con el VIH que no conocen su estado de infeccion. Como parte del ensayo Sankofa, entrevistamos a 435 niños de 6 a 18 años inscritos en atención clínica cuidado en clínicas pediátricas de VIH en dos hospitales docentes en Ghana. El análisis temático teórico generó temas entre las respuestas obtenidas. Los niños creen que vienen a la clínica a recoger medicamentos, a tratar síntomas específicos, a prevenir y tratar “condiciones” o como parte de su cuidado rutinario. A traves de entrevistas, aprendimos que la mayoría de los niños aprendieron de su "enfermedad" de un miembro de la familia. Esta mayoría (73.5%) nunca habían hablado sobre su "enfermedad" con nadie más; debido a muchas consecuencias temidas. Los niños que viven con VIH que no conocen su estado, exhiben signos de estigma anticipado e internalizado con respecto a su "enfermedad" desconocida. El entender la forma en que los niños conceptualizan su enfermedad tiene implicaciones para la promoción de la salud y el suministro de información adecuada a los niños que viven con el VIH.

espanolLos estudios emergentes de humanidades medicas proponen una aproximacion cultural a la medicina que cuestiona el positivismo, el pragmatismo, la naturaleza hegemonica y la tendencia a objetivar y cosificar que existe en las practicas de la medicina a lo largo de la historia. Dentro de este marco teorico, el presente trabajo intenta explorar el asma desde una perspectiva cultural, centrada en su metaforizacion en la literatura a traves de las obras La casa de los espiritusde Isabel Allende, Respirede Anne-Sophie Brasme, Cracksde Sheila Kohler y Lord of the Fliesde William Golding. Se observa una estrecha relacion entre la representacion de la marginalidad, el concepto derridiano de la respiracion y los sintomas asmaticos, una representacion que ayuda a crear, a su vez, un efecto curativo caracteristico de las narrativas de enfermedad. EnglishThe emerging studies of medical humanities propose a cultural approach to medicine that questions positivism, pragmatism, the hegemonic nature and the tendency to objectify and reify that exists in medical practices throughout history. Within this theoretical framework, the present work attempts to explore asthma from a cultural perspective, focused on its metaphorization in literature through Isabel Allende’s The House of Spirits, Anne-Sophie Brasme’s Breathe, Sheila Kohler’s Cracks and William Golding’s Lord of the Flies. There is a close relationship between the representation of marginality, the Derridian concept of breathing, and asthmatic symptoms, a representation that helps create, in turn, a healing effect characteristic of illness narratives.

Purpose Chronic conditions affect the lives of thousands of people in the United States. Dysphagia is a symptom that co-occurs with many chronic conditions. This presents unique challenges to speech-language pathologists (SLPs) who work with patients that are physically and psychosocially burdened by chronic dysphagia. Clinical decisions in chronic care are characterized by context-dependent complexities. There is a theoretical framework in bioethics called narrative ethics , which suggests that engaging with patients' illness narratives informs patient-centered decision making and that exploring contexts is essential to provision of care. Conclusion Using a narrative approach in decision making in chronic dysphagia helps contextualize the symptoms and supports clinicians to form individualized treatment plans that better suit patients' health care and psychosocial needs.

Researchers estimate that ten percent of people who have had COVID-19 experience prolonged symptoms. Often referred to as Long COVID, these symptoms, which can include fatigue, shortness of breath, brain fog, sleep disorders, fevers, gastrointestinal symptoms, anxiety, and depression, can persist for months and can range from mild to incapacitating. In some cases, new symptoms arise sometime after initial infection or evolve over time. While still being defined, these effects are now collectively referred to as Post-Acute Sequelae of SARS-CoV-2 infection (PASC) in the United States, also known as mild-covid or Long COVID. These patients call themselves “long-haulers” and they are facing doubts from medical providers about their symptoms when seeking services and treatment. Although research studies have indicated women are more likely to be long-haulers, it is, in fact, women who have reported experiencing difficulties negotiating a diagnosis by the medical community, repeatedly being told "it's just anxiety." How does disbelief and delegitimation affect the illness experiences of women with contested illnesses? This article seeks to examine, through the lens of Long COVID, how disbelief and delegitimation affect the illness experiences of women with contested illnesses.

Background: The use of technologies in health is changing the relationship between patients and their conditions. In the case of chronic pain, social media are offering these individuals a new way ...

This essay brings together critical perspectives from the discrete traditions of artists’ books and the medical humanities to examine artists’ books by three contemporary artists – Penny Alexander, Martha A. Hall and Amanda Watson-Will – that treat experiences of illness and wellbeing. Through its focus on a multimodal and multisensory art form that has allegiances with, but is not reduced to, narrative, the essay adds to recent calls to rethink key assumptions of illness narrative study and to challenge utilitarian approaches. In particular, it draws attention to the aesthetic and imaginative elements of illness communication by exploring how artists’ books represent lived experiences in a distinctively palpable way and offer an “intimate authority” that extends beyond narrative legitimacy or a form of struggle against the medical gaze. By interrogating narrative’s dominance in medical humanities research, the essay further expands awareness of illness experiences that resist conventional forms of representation (such as chronic illness), and of alternative reflective practices within healthcare education that encourage engagement with both mind and body.

South Africa is reported as one of the countries with a high burden of tuberculosis (TB). In response to the epidemic, the country’s national Department of Health attempted to improve access to hea...

In this article we present a micro-analysis of 27 English blogs of people who reflect on their illness experience and the ostomy surgery they had to undergo as a result of that illness. We adopt an approach based on two related perspectives: conversation analysis and discursive psychology. Both perspectives consider language as a tool for social action. Our findings demonstrate that the discourse of the blogs serves three important social functions. First, the bloggers are able to describe how they have managed their ill-health for a long time, and how ostomy surgery became an inevitable next step. Second, bloggers can demonstrate their acceptance of the ostomy bag in embodied and personified ways (e.g., naming their bag) as well as emphasizing a return to a new normal. Third, ostomates present their stoma as a transformational occurrence. They do so by emphasizing extraordinary achievements in their lives after their stoma surgery and by displaying a strong normative claim to act as a role model. With this micro-analysis we have attempted to uncover how ostomates engage in identity work vis-à-vis their illness and how this is accomplished in the discourse of their blogs. This fine-grained analysis may be of importance to fellow ostomates and medical professionals, as it highlights the main concerns of ostomates in their experiential account of ostomy surgery.

Written in the form of biomythography, the story collection Notes on the Flesh remains a foundational text of illness narrative by a disabled Arab woman. Unlike the typical autobiography, memoir, l...

In the last decades, narrative theory has collaborated with sociology and anthropology of health to account for the importance that illness narratives hold for those who are or have been sick, for ...

This essay begins with a metaphor describing who enters the field of humanities in medicine and healthcare and the types of work they do. The role of witness is discussed, underscoring tensions between witnessing and analyzing. The essay then turns to my own background as an example of how each professional in this field brings something distinct. I briefly describe the three basic principles of my work with narrative: the injunction to keep the stories in the foreground, the work of amplifying and connecting stories, and the need for generous interpretation. The second half of the essay tells three illness stories, describing their importance to me over several decades. These stories are by Audre Lorde, Reynolds Price, and Stewart Alsop, dealing with problems of silences imposed on ill people, problems caused by physicians' perceived lack of time, and dilemmas of the end of life, respectively.

OBJECTIVE: To understand the oral healthcare experiences of humanitarian migrants in Montreal and their perceptions of ways to improve access to oral healthcare. METHODS: We used focused ethnography informed by a public health model of the dental care process. The adapted McGill Illness Narrative Interview (MINI) guided interviews of a purposeful sample of humanitarian migrants who received or needed dental care in Montreal. Each interview (50–60 min) was audio-recorded for verbatim transcription. Observation of dental care episodes occurred during mobile dental clinics in underserved communities over the same period (2015–2016). Data analysis combined deductive codes from the theoretical frameworks and inductive codes from interview transcripts and field notes to inform themes. RESULTS: We interviewed 25 participants (13 refugees and 12 asylum seekers) from 10 countries, who had been in Canada for a range of 1 month to 5 years. The dental care experiences of participants included delayed consultation, proximity to dental clinics, quality care, limited treatment choices, high cost, and long waiting times. A more inclusive healthcare policy, lower fees, integration of dental care into public insurance, and creation of community dental clinics were proposed strategies to improve access to dental care. CONCLUSION: Humanitarian migrants in this study experienced inadequate oral healthcare. Their lived experiences help us to identify gaps in the provision of oral healthcare services, and suggestions of participants have great potential to improve access to oral healthcare.

Illness stories are a prime analytical way of understanding patient perspectives on cancer. Nevertheless, limited studies have focused on stories of endometrial cancer. An ethnographic study including participant observation and interviews among 18 Danish women with endometrial cancer was conducted to examine prevalent stories and the ways the women responded to them. In this article, the analysis focuses on two exemplary cases, which present a line of issues related to the kinds of experiences that suffering includes. Findings illustrate that feelings of luck were central to the experience of being diagnosed, treated and cured, which was related to the way health professionals framed endometrial cancer as favourable through notions of curable/incurable, trivial and gentle/invasive and brutal, and aggressive/non-aggressive. Drawing upon the concept of a ‘hierarchy of suffering’, we exemplify how women tended to scale own experiences of suffering against others’, leading some to believe they were not in a legitimate position to draw attention to themselves nor seek help and support, despite adverse physical, psychosocial effects. Thus, feelings of being lucky were intertwined with a sense of ambivalence. We conclude by discussing how suffering arises within a moral context, suggesting that the ways we speak of cancer may make some experiences unspeakable. This calls for increased clinical attention to more diverse narratives of cancer.

Biobanks have been established from the beginning of the millennium as relevant infrastructures to support biomedical research. These repositories have also transformed the paradigm of collecting and storing samples and associated clinical data, moving these practices from the healthcare services and research laboratories to dedicated services. In Portugal, the establishment of biobanks is happening in the absence of a specific legal framework, turning it difficult to fully understand the scope of their action. This ethnographic research explored how establishing a biobank challenges the dynamics between healthcare and biomedical research. The ethnography intended to follow the path of biological samples from the hospital, where they were collected, to the biobank in a research institute, where they were stored. Findings suggest that although the nature of the biobank’s technical work seemed to inscribe it as a research-oriented setting, the biobank’s daily work was performed through symbolic action in the logic of care. Biobank staff constantly recalled the human nature of the samples, and they built complex illness narratives of each sample, promoting a connection with the absent donor. These practices were crucial to constructing the biobank as a health place, one that was designed to be life-saving in the near future. info:eu-repo/semantics/publishedVersion

Introdução: A fibromialgia é uma doença crónica caracterizada por dor músculo-esquelética generalizada. A intervenção não-farmacológica constitui o tratamento de primeira linha recomendado para a fibromialgia, devendo incluir a realização de exercício físico, bem como a educação para autogestão da condição clínica. A necessidade de compreender as estratégias educativas utilizadas para a promoção da autogestão e o seu impacto foi identificada como uma das prioridades de investigação, no contexto da fibromialgia. Conhecer e compreender as perspetivas dos indivíduos acerca do tratamento permite o refinamento e desenvolvimento de intervenções em fisioterapia centradas nas suas necessidades e expectativas, bem como a obtenção de melhores resultados no futuro. Objetivo: O objetivo deste estudo foi explorar, com base nas perspetivas de indivíduos com fibromialgia, o contributo das sessões educativas, integradas num programa de fisioterapia, para a capacidade de autogestão da condição clínica. Secundariamente, pretendeu-se ainda identificar e analisar as características da intervenção/ sessões educativas consideradas mais relevantes para a promoção da capacidade de autogestão. Método: Foi realizado um estudo qualitativo com o intuito de explorar as experiências de 14 indivíduos com fibromialgia relativamente às sessões educativas integradas no programa de fisioterapia em que participaram. Para a recolha de dados foram conduzidos quatro grupos focais, baseados num guião de entrevista semiestruturada. Os grupos focais foram gravados em formato áudio e vídeo e posteriormente transcritos e analisados através de análise temática. Numa primeira fase, os dados foram analisados de forma independente, por dois investigadores e, posteriormente, as análises foram discutidas. Para garantir a qualidade do estudo foram utilizadas diversas estratégias: triangulação de investigadores; “member checking” (revisão pelos participantes); “audit trail” (auditoria); e diário reflexivo. Resultados: Da análise dos dados emergiram 5 temas que foram agrupados em duas dimensões principais: I. Contributo das sessões educativas para a capacidade de autogestão da fibromialgia; II. Características da intervenção promotoras da capacidade de autogestão. Na dimensão I. foram integrados os temas: (1) Aprendizagem; (2) Validação; (3) Reinterpretação; (4) Empoderamento; enquanto a dimensão II. englobou o tema (5) Características da Abordagem Clínica. Conclusões: O conhecimento adquirido durante as sessões educativas, integradas num programa de fisioterapia, parece ter contribuído para a reinterpretação da fibromialgia, dos seus sintomas e da forma como as participantes se relacionavam com os outros, fomentado a sua perceção de empoderamento e a sua capacidade de autogestão da condição clínica. A educação baseada na partilha das suas narrativas clínicas, juntamente com a possibilidade de contactarem com outras pessoas com fibromialgia, bem como a personalização das sessões, por parte da fisioterapeuta, foram considerados essenciais para a promoção da capacidade de autogestão da fibromialgia. Introduction: Fibromyalgia (FM) is a chronic condition characterized by widespread musculoskeletal pain. Non pharmacological therapy is the first-line therapy recommended for the management of FM and should include exercise and patient self-management education. A better understanding of self-management strategies and their impact has been identified as a research priority, in the context of fibromyalgia. The deep understanding of patients` illness and treatment experiences, may provide relevant information to refine and implement physiotherapy interventions centred on their needs and expectations as well as achieve better outcomes in the future. Aim: This study aimed to explore the perceptions of individuals diagnosed with fibromyalgia about the role of educational sessions, integrated in a physiotherapy programme, in the ability to self-manage fibromyalgia. Secondly, we aimed to identify and analyse the clinical approach features they considered most relevant to the promotion of self-management. Methods: A qualitative study was carried out to explore the perceptions of 14 individuals with fibromyalgia about the educational sessions integrated in a physiotherapy program, in which they had participated. Four focus groups were conducted, based on a semi-structured interview schedule. The meetings were audio recorded and videotaped, transcribed verbatim and thematically analysed. Data were analysed independently by two researchers, and then both analyses were discussed. In order to ensure the quality of this study, several strategies were used: investigator triangulation; member checking; audit trail; and reflexive diary. Results: Following thematic analysis, five themes emerged and were grouped into two overarching themes: I. The role of educational sessions to self-management of fibromyalgia; II. Clinical Approach Features promoting self-management ability. The overarching theme I. integrated four themes: (1) Learning; (2) Validation; (3) Reinterpretation; (4) Empowerment; and the overarching theme II. encompassed one theme: (5) Clinical Approach Features. Conclusions: The knowledge acquired by participants after participating in the educational sessions, seems to have contributed to the reinterpretation of illness, its symptoms and the way they related to other people. These aspects increased their perception of empowerment and their ability to self-manage fibromyalgia. The participants considered that the possibility of sharing their illness narratives and meeting patients diagnosed with fibromyalgia, as well as the physiotherapist`s capacity to personalize treatment were important factors to enable them for self-management

Illness narratives are uncommon in Arabic fiction. Literary Disability Studies considers how disability operates in a text. This paper examines the lack of illness narratives in Arabic fiction and traces the sociological reasons behind this absence. A close-reading of an Arabic novel examining Multiple Sclerosis is presented. The novel (Āyām Jamīlah, (Beautiful Days) by Palestinian-Jordanian author Reema Humood) presents Multiple Sclerosis as a complex narrative of both illness and societal discrimination. An interview with the author is used for supplementary analyses.

SummaryIn mental health services, recovery constitutes a guiding principle that is endorsed in professional medical guidelines and has become central to mental health policies across the world. However, for many clinicians, it can be a challenge to effectively embed recovery concepts into professionally directed treatment of disease without distortion, and ostensibly away from what matters to those who use the services. We discuss the evolving and multifaceted concept of ‘recovery’, including illness narratives to frame our discussion. We demonstrate how integration between a person-directed management of illness and a professionally directed treatment of disease can converge, resulting in positive outcomes for people with mental illness.

Capoeira, the African-Brazilian dance and martial art has enthusiastic devotees in Britain. Most practitioners are acutely aware of their capoeira embodiment, and have strategies to protect themselves from injury, and ways to seek treatment for any injuries they get. Drawing on data from a long-term ethnography and a set of 32 open-ended interviews with advanced students, the paper explores student strategies to prevent capoeira injuries, and their discoveries of effective remedies to recover from them, before it presents an analysis of their injury narratives using Frank's three-fold typology of illness narratives. The capoeira study therefore adds to the research on sports and dance injuries, and to the intellectual debates on the nature of narrative in research on illness and injury as well as exploring one aspect of the culture of capoeira students in the UK.

This essay looks at the liminal genre of the critical pathography, a literary form that bridges the boundary between an academic analysis and an illness narrative. It argues that when this genre is compared to more traditional forms of analysis in the medical humanities and bioethics, the critical pathography treats its subject in a manner that is more akin to what Gabriel Marcel refers to as a mystery, something that can only be explored, than to a problem, a puzzle that can be solved.

Up to this point, I have presented the meanings and experiences of the HIV epidemic in secretive public narratives. In this chapter I shift the focus to explore individual experiences of AIDS, through the lens of a biographical account of a young couple. I view their life, and the end of their lives, in terms of the concept of hope. Located at the turning point of the HIV epidemic, when ART was slowly becoming available in Bushbuckridge, I trace their quest for healing, care and support. While driven by the hope for an end to suffering, their accounts of interactions with health professionals and family, highlights their despair and hopelessness.