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In this qualitative, grounded theory study we examine how the intersection of self-reflection, illness narratives and perceived messages of professional identity inform care provided by medical, nursing, and medical family therapy students to patients and families. We discovered four common challenges students faced navigating personal experiences of illness and connecting to patients: 1) discrepancies between ideal and lived experiences, 2) challenges of healthcare work and culture, 3) navigating power and hierarchy, and 4) developing a shell of privacy. Discussion and implications include interdisciplinary training and collaboration and the unique role of medical family therapists in healthcare.

Physicians' narratives of their own experiences of illness can be a kind of empathic bridge across the divide between a professional healer and a sick patient. This essay considers ways in which physicians' narratives of their own and family members' experiences of cancer shape encounters with patients and patients' experiences of illness. It analyzes ethical dimensions of physicians' narratives (such as those by Atul Gawande, Siddhartha Mukherjee, and Paul Kalanithi) and of reflective writing in medical education. It also compares illness narratives written by physicians-turned-patients to those written by patients without medical training in order to explore questions of who ultimately benefits from these narratives and whether these narratives can engender greater empathy between clinicians and patients.

Patients’ stories of their illnesses help bridge the divide between patients and providers, facilitating more humane medical care. Illness narratives have been classified into three types: restitution (expectation of recovery), chaos (suffering and loss), and quest (unexpected positive effect from illness). Undiagnosed patients have unique illness experiences and obtaining their narratives would provide insights into the medical and emotional impact of living with an undiagnosed illness. Adults and children with undiagnosed diseases apply to be evaluated by the Undiagnosed Diseases Network (UDN). Written illness narratives from 40 UDN applicants, including 20 adult probands who applied for themselves and 20 parents who applied for their children, were analyzed for: 1) narrative content and 2) narrative type. Narrative content: could be grouped into three themes: 1) Expectations of the UDN: the majority felt they had no further healthcare options and hoped the UDN would provide them with a diagnosis, with the adults expecting to return to their previously healthy life and the parents wanting information to manage their child’s healthcare. 2) Personal medical information: the narratives reported worsening of symptoms and some offered opinions regarding the cause of their illness. The proband narratives had few objective findings, while parental narratives had detailed objective information. 3) Experiences related to living with their undiagnosed illness: frustration at being undiagnosed was expressed. The adults felt they had to provide validation of their symptoms to providers, given the lack of objective findings. The parents worried that something relevant to their child’s management was being overlooked. Narrative type: All the narratives were of the chaos type, but for different reasons, with the probands describing loss and suffering and the parents expressing fear for their child’s future. The parental narratives also had elements of restitution and quest, with acceptance of “a new normal”, and an emphasis on the positive aspects of their child’s illness which was absent from the probands. These narratives illustrate the chaos that coexists with being undiagnosed. The differences between the proband and parental narratives suggest that these two groups have different needs that need to be considered during their evaluation and management.

A patient- and family-centred approach in paediatric health care is important because parents are involved in making key decisions about their child’s health care and advocating for the best interest of the child. Parents and family members are increasingly turning to the internet to find and actively share information about their child’s health care. Twitter is one of many online platforms used by parents of children diagnosed with cancer to share information related to their child’s cancer experience. Existing research suggests that there is a need to better understand the motives for using Twitter for sharing content about a child’s cancer experience. Furthermore, there is a lack of theoretical frameworks for characterizing those motives. In this paper, we identify key themes of tweets posted by parents of children diagnosed with cancer and align those themes with motives inspired by the well-studied Everyday Life Information Seeking framework. We propose a new motive in addition to those assoc...

We interweave arts-based inquiry, painting, and autoethnography, to critically examine one researcher's fearful narratives around cancer, death, dying, and family myths. These methods give us the distance to deconstruct Christine's past schema in order to take away its powerful influence on her life. This destabilized illness narrative leads to a transformational narrative of peace. Arts-based inquiry invites the viewer/reader to engage in similar acts of deconstruction and transformation.

Meaning-making has been shown to be a core process for patients adjusting to a chronic illness, and narratives have become an important lens through which to study how individuals make meaning, or make sense, of illness. These narratives give voice to the lived experience of chronic illness and its many effects on health and vitality, daily life, and sense of self. This chapter reviews the research on meaning-making processes in the context of inflammatory bowel disease. It first examines the disruptive effects of chronic illness, focusing on biographical disruption, loss of self, and temporal dimensions of meaning. Then, it turns to the reconstruction of meaning through illness narratives, exploring both individual and social processes. The study of meaning-making through illness narratives has many potential benefits to health care initiatives as well as to patients themselves.

As clinical-psychological scientists and practitioners increasingly work with diverse populations of traumatized people, it becomes increasingly important to attend to cultural models that influence the ways in which people understand and describe their responses to trauma. This paper focuses on potential uses of the concept of cultural script in this domain. Originally described by cognitive psychologists in the 1980s, scripts refer to specific behavioral and experiential sequences of elements such as thoughts, memories, attention patterns, bodily sensations, sleep abnormalities, emotions and affective expressions, motivation, coping attempts, and ritualized behaviors that are relevant to posttraumatic adjustment. We differentiate between experiences of traumatic stress that are scripted (e.g., cultural explanations are available) versus unscripted. Further characteristics such as script tracks, the effect of script interruptions, and contextual fit of scripts with other cultural models are also described. We consider examples of traumatic stress associated with war and organized, sexualized violence from “Western” and “non-Western” world regions. The concluding part of this review describes a number of possibilities for methodological approaches to assessment of cultural scripts. Capturing central elements of the script(s) of trauma would aid psychological researchers and clinicians in understanding the experiences of trauma in cultural context, which could ultimately lead to better clinical service opportunities worldwide.

Background and aims. In pediatrics receiving a diagnosis of a chronic condition is a matter that involves caregivers at first. Beyond the basic issues of caring for the physical body of the ill child, caregivers’ manners of facing and making sense of the disease orient and co-construct their children’s sensemaking processes of the disease itself. The aim of this article is to explore the experience of a rare chronic illness, Hereditary Angioedema (HAE), in pediatrics, from the caregivers’ perspective. Hereditary Angioedema is characterized by subcutaneous swellings that can involve the mucosal tissues of external as well as internal parts of the body, manifesting in a highly variable and unpredictable way in terms of localization, severity, and frequency. Materials and methods. Within a qualitatively-driven research design, we conducted a qualitative narrative semiotic analysis of n.28 mothers’ narratives on their children’s disease experience. Narratives were collected by an ad hoc interview on three domains of the disease experience: A. interpretation of the disease variability; B. dialogical processes; C. management of the disease. Subsequently, we executed a TwoStep cluster analysis for categorical data to detect cross-sectional profiles of the maternal sensemaking processes of the disease. Results. The coding grid was built analyzing the characteristic of the narrative links that orient the connection between the elements of the experience within each domain: A. the connection among events, for the domain of the interpretation of the disease variability; B. the connection between self and other, for the domain of the dialogue; C. the connection among sensemaking and actions, for the domain of the management of the disease. Results from cluster analysis show three narrative profiles: 1. adempitive; 2. reactive; 3. dynamic. Discussion. Profiles will be discussed in the light of the general conceptual framework of the Sense of Grip on the Disease (SoGoD) highlighting the importance of those sensemaking processes which, instead of relying on a coherent and close interpretation of the disease, are characterized by a degree of tolerance for the uncertainty and the unknowingly.

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.

Aim: The dual aim of this research was to consider the impact of providing the First Steps program on the stories of people with Parkinson&rsquo, s Disease (PD) and to investigate the psychosocial and emotional mechanisms which may explain this impact. Methods: A qualitative study using a subtle realist paradigm and hermeneutic phenomenological methodology was undertaken. A single semi-structured interview was used to consider the impact and experiences of people with PD who completed either the intervention (2-day peer-led behavior intervention using storytelling 6&ndash, 8 weeks apart) or received telephone support calls as part of the active control group. Descriptive statistics and a narrative analysis were undertaken on the results. Results: Forty-two participants were invited to participate, forty of whom completed the interview. This included 18 from the intervention group and 22 from the active control group. The intervention group identified the value of the program as worth-while, demonstrating improved exercise behavior and coping mechanisms following the intervention. Three major stories (the affirmed, the validated and the transformed story) identified the impact of the intervention. Three internal mechanisms (perceived control, hope and action, and the individual&rsquo, s mind set) alongside three social mechanisms (social comparison, social control and the first opportunity to share with peers) appeared to explain this impact. Conclusion: This study provides exciting and novel evidence of the impact of a peer-led psycho-educational intervention for people newly diagnosed with PD. Further research is needed to consider the impact of stories-based approaches on participants and consider a critical evaluation of the mechanisms which may explain changes in stories and self-reported behaviour.

This study describes the illness narratives that inform treatment-seeking behaviours for acute abdominal conditions in Cambodia, and thereby explores factors impeding the timely delivery of surgical intervention. Semi-structured qualitative interviews were undertaken with patients who had undergone abdominal surgery at Siem Reap Provincial Hospital between 2011 and 2014. Interviews collected basic demographic information and also patient narratives based on Groleau's McGill Illness Narrative Interview (MINI). Interviews were contemporaneously translated from Khmer to English and recorded for transcription. A content analysis of interview transcripts based on narrative enquiry was undertaken. Ninety-seven patients participated in the study and five themes emerged from the data. These were: Explanatory models about the causes of abdominal pain and effects of surgery; Pre-surgery stoicism and illness management; Fear of poor outcomes and death; Burden of treatment costs and anticipated recovery time; and, Enhancing community trust in surgery. Our findings add the patient voice to the limited evidence about access to surgery, and socio-cultural and financial barriers affecting treatment-seeking behaviours in Cambodia. By understanding the collective narratives surrounding experiences of abdominal surgery, efforts to improve surgical services in Cambodia may be better informed of the reasons patients delay treatment.

Preparing students for a complex and ever-changing health-care environment is a daunting task for nurse educators. One way to accomplish this task is by reducing the gap between what is learned in school and what is practiced upon graduation. Nurse educators are challenged to create online environments that engage students with real-life activities that resemble practice—authentic learning. One authentic learning activity created for an oncology nursing course that resonated with students was Ann's Story. Ann, a nursing professor, was diagnosed with cancer, and her story was used in a course about caring for patients with cancer. Ann's goal of making something good come of her cancer diagnosis was met through student comments reflecting newfound wisdom in sharing thoughts, feelings, and compassion with patients rather than concentrating only on the completion of tasks.

Background: Illness narratives with meaningful, competent and targeted content have been shown to provide useful guides for patient decision-making and have positive influences on health behaviors. The use of narratives in decision aids can confer a sense of structure, plot and context to illness experiences and help patients make treatment decisions that feel sensible, informed, and transparent. Aim: This paper presents narratives of suffering and healing from patients and their caregivers with advanced heart failure who engaged in decision-making regarding Left Ventricular Device Assist (LVAD) treatment. Methods: Narratives were collected from in-depth interviews with patients who accepted (n = 15) versus declined (n = 15) LVAD implant, LVAD candidates who had received education about LVAD and were in the process of making a decision (n = 15), and caregivers (family or significant others) of LVAD patients (n = 15). Results: Participants shared &ldquo, restitution&rdquo, narratives that most commonly conveyed a shift from pre-implant physical suffering and &ldquo, daily hell,&rdquo, fatigue so intense it &ldquo, hurts,&rdquo, along with emotional suffering from inability to engage with the world, to post-implant improvements in mobility and quality of life, including positivity and family support, adaptation on a &ldquo, journey,&rdquo, &ldquo, getting one&rsquo, s life back&rdquo, and becoming &ldquo, normal&rdquo, again. Conclusion: For LVAD patients, other patients&rsquo, illness narratives can help to give meaning to their own illness and treatment experiences and to more accurately forecast treatment impacts on lifestyle and identity. For clinicians, patient narratives can enhance patient&ndash, practitioner communication and understanding by highlighting perspectives and values that structure patients&rsquo, clinical experiences.

In this chapter we present a methodological template for the use of video diaries (vlogs) as data in social science research, with a particular eye toward the selection, coding, and analysis of vlogs as data. Amid the sea of YouTube content, vlogs provide a medium for ordinary people to tell and share sobering stories about coming to terms with profound life events. YouTube vlogs that present individuals’ experiences with illness are a case in point. Considered as illness narratives, vlogs afford a new way to both document and study the experience of illness. Of importance to us here, vlogs project the physical body into cyberspace in ways that shape how “wounded storytellers” (Frank 1995) perform their illness. Beyond the specifics of our empirical case, therefore, a study of illness vlogs is relevant to body scholars interested in the representation and construction of bodies in online spaces.

This article addresses the growing trend of crowdfunding for unproven stem cell-based treatments. Our analysis uses quantitative and qualitative data collected from two popular fundraising sites to examine how these sites are used to fund purported stem cell 'treatments' or 'therapies'. In addition to mapping the use and success of these online campaigns by people with different health conditions in different locations, we consider the breakthrough restitution story as a key narrative that campaign organisers use to solicit donations. We argue that crowdfunding is a rapidly growing digital space where 'truths' about experimental treatments are constituted and a politics of evidence is unfolding. These developments are to the potential financial benefit of crowdfunding platforms and businesses offering unproven stem cell-based interventions, and to the potential detriment of patients and their supporters.

In pediatric chronic illness, little is known about the relational interactions between adolescent patients, parents, and illnesses and how they influence self-management of illness. We conducted interviews with 32 individuals (16 dyads) representing adolescents diagnosed with a chronic illness and their primary parent who had been referred to a psychosocial treatment program for challenges with illness management. Interviews were conducted individually and analyzed dyadically using grounded theory to better understand the relational processes that may be contributing to illness management difficulties. Results include a theory of patient-parent illness responses and how parental illness meanings play a role in adolescent self-management. Results can be used to better understand and treat family relational patterns that may be influencing pediatric illness management challenges.

In a first, tentative and explorative review, the paper discusses issues of resilience performance in socially addressed illness narratives in the context of political communication and self-representation. Using the examples of U.S. President Donald Trump and British Prime Minister Boris Johnson and their Covid-19 disorders, the paper explores forms of media self-representation as resilient politicians. In a critical reading, the gender-coded displays of vulnerability and masculine resilience are related to the performance of the supposedly normal. Taking Judith Butler as a reference point, the illness narratives of strength are interpreted as a defense against and fear of weakness and threat. In the conclusion, the initial observations are related to questions of new forms of authoritarianism, so-called soft authoritarianism. The article is intended as a sketch and as a preliminary consideration for a future systematic study of vulnerability, gender, and political communication.

Background Women diagnosed with breast cancer are often bombarded with information. Such information overload can lead to misunderstandings and hamper women’s capacity for making informed decisions about their care. For women with breast cancer, this uncertainty is particularly severe in the period before surgery. Personalized narratives about others’ experiences can help patients better understand the disease course, the quality and type of care to be expected, the clinical decision-making processes, and the strategies for coping. Existing resources and eHealth apps rarely include experiential information, and no tools exist that tailor information for individual preferences and needs—offering the right information at the right time and in the right format. Combining high-quality experiential evidence with novel technical approaches may contribute to patient-centered solutions in this area. Objective This study aims to design and seek preliminary feedback on a mobile app that will improve information access about surgery for patients with breast cancer, by drawing on a qualitative collection of personal narratives from a diverse sample of Canadian women and using video and audio recordings or audio recordings from the Canadian Health Experiences Research Network. Methods In a previous study, we conducted in-depth interviews with 35 Canadian women and used video and audio recordings or audio recordings to collect stories about the lived experiences of breast cancer. The participants highlighted the need for more specific information between diagnosis and surgery that was relevant to their personal situations and preferences. They also wanted to learn from other women’s experiences. We worked with patients, clinicians, and informatics experts to develop a mobile app that provides access to tailored experiential information relevant to women’s personal situations and preferences. We completed focus groups and qualitative interviews, conducted a further analysis of the original qualitative data, designed novel software using artificial intelligence, and sought preliminary feedback from users on a new app via focus groups and a survey. Results The secondary analysis of the breast cancer narratives revealed key themes and their interconnections relevant to the experience of surgery, including preparation, treatment decisions, aftercare, reconstruction, prostheses, lumpectomy and mastectomy, and complications. These themes informed the development of the structure and content of the app. We developed a recommender system within the app by using content matching (user and speaker profiles and user interests and video content) and collaborative filtering to identify clips marked as relevant by the user and by similar users. A 2-minute animated introductory video for users was developed. Pilot testing revealed generally positive responses regarding the content and value of this type of e-tool. Conclusions Developing reliable, evidence-based tools and apps that are based on diverse collections of people’s experiences of illness offers a novel approach to help manage the plethora of information that women face after a diagnosis of breast cancer.

This paper analyses the COVID-19 narratives of US President Donald Trump and UK Prime Minister Boris Johnson, combining principles from applied linguistic approaches to illness narratives and sociolinguistic approaches to language and gender. It focuses specifically on the ways Johnson and Trump structured their stories to portray themselves as certain kinds of ‘characters’, the ways they discursively constructed agency in their narratives, and the ways they engaged in various practices of stance-taking. The analysis reveals that, although Johnson and Trump seemed to have taken very different lessons from their illnesses, the subtext of both their narratives promoted a masculinist discourse designed to depict them as ‘strong leaders’ and to detract attention from discussions of their reckless personal behaviour leading up to their infections and the failures of their governments to formulate coherent plans to control the pandemic. Keywords: affect, agency, illness narratives, masculinity, stance

We examined whether narratives related to mental health and pain in 120 women with endometriosis. Participants wrote narratives about endometriosis, rated the narratives on centrality to identity and positive and negative self-change, and completed measures of depressive symptoms, life-satisfaction, pain intensity and pain symptoms. Narratives were content-coded for themes of agency and communion. Higher centrality to identity, more negative self-change, and lower agency and communion were related to poorer mental health. Higher centrality to identity was associated with more pain symptoms. Narrative measures predicted mental health beyond pain intensity, pain symptoms, and neuroticism. The results indicate that how women with endometriosis narrate their illness is connected to mental health.

The daily work of the clinical ethics teacher and clinical ethics consultant falls into the routine of classifying clinical cases by ethical type and proposing ethically justified alternatives for the professionally responsible management of a specific type of case. Settling too far into this routine creates the risk of philosophical inertia, which is not good either for the clinical ethicist or for the field of clinical ethics. The antidote to this philosophical inertia and resultant blinkered vision of clinical ethics is sustained, willing exposure to philosophical provocation. The papers in this clinical ethics issue of the Journal of Medicine and Philosophy provide just such philosophical provocation related to core topics in clinical ethics: the distinction between clinical practice and clinical research; telemedicine, or medicine at a distance; illness narratives; the concept of the placebo effect; and sex reassignment.

In the field of chronic and serious illness, meaning-making with regards to the illness experience has been shown to be a core process for patients. This study focuses on women's narratives of their experiences of living with breast cancer. Within the framework of narrative psychology, illness narratives are considered to provide the main means through which patients make sense of their illness experience and construct its place in their life story. In this paper, we present findings from a narrative study that aimed to explore the different meanings that breast cancer holds for Greek women. In the broader study, four basic narrative types about breast cancer emerged from the analysis. In this paper, we focus on one of these narrative types, in which illness is constructed as an entrance into a state of liminality and where the women's sense of self seems to be “suspended”. The core features of this narrative type are described and arguments are developed regarding its usefulness. We argue that this is a narrative type that deserves further attention, particularly as it seems to reflect a socially non-preferred storyline, which might result in these women's stories being sidestepped or silenced. The implications of this narrative type for healthcare and counselling in cancer care are discussed.

The authors analyzed messages from an online support group for parents of children with Persistent Hyperplastic Primary Vitreous. This eye disorder, while not life-threatening, affects children’s eyesight and can impinge on the lives of parents and caretakers. The literature review examines Frank’s typology of illness narratives, prompting the question of whether Frank’s work is applicable to the narrative accounts of people who do not experience illness firsthand. Analysis of support group discourse not only confirms prior studies of illness narratives but also suggests that current typologies do not fully address the accounts of those who witness and are affected by the illness of another.

In recent decades studies based on questionnaires and interviews have concluded that when doctors become ill they face significant barriers to seeking help. Several reasons have been proposed, primarily the notion that doctors' work environment predisposes them to an inappropriate help-seeking behaviour. In this article, the idea of the ill physician as a paradox in a medical drama is examined. Through a text-interpretive and comparative approach to historical illness narratives written by doctors suffering from one specific diagnosis, namely opioid addiction, the complex set of considerations guiding their behaviour as patients are to some extent revealed. The article concludes that, in the identity transition necessary to become a patient, doctors are held back by their professional status and that every step to assist them needs to take shape based on an awareness of the underlying principles of the medical drama. Written illness narratives by doctors, such as those highlighted in this article, might serve as a tool to increase such awareness.