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Background: This research aimed to investigate the experience of Neuromyelitis Optica Spectrum Disorders (NMOSD) by integrating the perspectives of patients, caregivers and clinicians through narrative-based medicine to provide new insights to improve care relationships. Methods: The research was conducted in the second half of 2022 and involved six Italian centres treating NMOSD and targeted adult patients, their caregivers and healthcare providers to collect the three points of view of living with or caring for this rare disease, still difficult to treat despite the pharmacological options. Narratives followed a structured outline according to the time: yesterday-today-tomorrow, to capture all disease phases. Results: Twenty-five patients diagnosed with NMOSD, ten caregivers and 13 healthcare providers participated in the research. Patients reported symptoms limiting their daily activities and strongly impacting their social dimension. We noticed improvements across disease duration, whilst the persistence of limitations was recurrent in patients with longer diagnoses. Caregivers' narratives mainly share experiences of their daily life changes, the burden of the caregiving role and the solutions identified, if any. Healthcare providers defined their role as a guide. Conclusion: Limitations in activities are prominent in the lives of people with NMOSD, along with fatigue. Family members are the weakest link in the chain and need information and support. Healthcare professionals are attentive to the helping dimension. [ABSTRACT FROM AUTHOR]

Little and colleagues' (1998) paper describing a key aspect of cancer patients' experience, that of "liminality," is remarkable for giving articulation to a very common and yet mostly overlooked aspect of patient experience. Little et. al. offered a formulation of liminality that deliberately set aside the concept's more common use in analysing social rituals, in order to grasp at the interior experience that arises when failing bodily function and awareness of mortality are forced into someone's consciousness, as occurs with a diagnosis of cancer. We set out the reasons as to why this analysis was so significant in 1998—but we also consider how the "liminality" described by Little and colleagues was (as they suggested) a feature of modernity, founded on what we term "the mirage of settlement." We argue that this mirage is impossible to sustain in 2022 amid the many forms of un-settling that have characterized late modernity, including climate change and COVID-19. We argue that many people in developed nations now experience liminality as a result of the being forced into the consciousness of living in a continued state of coloniality. We thus rejoin the social aspects of liminality to the interior, Existential form described by Little et. al. [ABSTRACT FROM AUTHOR]

During the initial months of the Covid-19 pandemic, credentialed experts—scientists, doctors, public health experts, and policymakers—as well as members of the public and patients faced radical uncertainty. Knowledge about how Covid-19 was spread, how best to diagnose the disease, and how to treat infected patients was scant and contested. Despite this radical uncertainty, however, certain users of Covid-19 Together, a large online community for those who have contracted Covid-19, were able to dispense advice to one another that was seen as credible and trustworthy. Relying on Goffman's dramaturgical theory of social interaction, we highlight the performative dimension of claims to lay expertise to show how credibility is accrued under conditions of radical uncertainty. Drawing on four months of data from the forum, we show how credible performances of lay expertise necessitated the entangling of expert discourse with illness experience, creating a hybrid interlanguage. A credible performance of lay expertise in this setting was characterized by users' ability to switch freely between personal and scientific registers, finding and creating resonances between the two. To become a credible lay expert on this online community, users had to learn to ask questions and demonstrate a willingness to engage with biomedical knowledge while carefully generalizing their personal experience. [ABSTRACT FROM AUTHOR]

Background: Although migraine is widespread and disabling, stigmatisation and poor awareness of the condition still represent barriers to effective care; furthermore, research on migraine individual and social impact must be enhanced to unveil neglected issues, such as caregiving burden. The project investigated the migraine illness experience through Narrative Medicine (NM) to understand daily life, needs and personal resources of migraneurs, their caregivers and clinicians, and to provide insights for clinical practice. Methods: The project involved 13 Italian headache centres and targeted migraneurs, their caregivers and migraine specialists at these centres. Written narratives, composed by a sociodemographic survey and illness plot or parallel chart, were collected through the project's webpage. Illness plots and parallel charts employed open words to encourage participants' expression. Narratives were analysed through Nvivo software, interpretive coding and NM classifications. Results: One hundred and seven narratives were collected from patients and 26 from caregivers, as well as 45 parallel charts from clinicians. The analysis revealed migraine perception in social, domestic and work life within the care pathway evolution and a bond between chaos narratives and day loss due to migraine; furthermore, narratives suggested the extent of the caregiving burden and a risk of underestimation of migraine burden in patients' and caregivers' life. Conclusion: The project represents the first investigation on migraine illness experience through NM simultaneously considering migraneurs', caregivers' and clinicians' perspectives. Comparing narratives and parallel charts allowed to obtain suggestions for clinical practice, while NM emerged as able to foster the pursuing of migraine knowledge and awareness. [ABSTRACT FROM AUTHOR]

In the Three-year Report of the Population-Based Cancer Registries: 2012–2014 published by the Indian Council of Medical Research (ICMR 2016) [11], the incidence of nasopharyngeal carcinoma (NPC) in Nagaland has been ranked as the highest in the country and the second-highest globally next to China. With the paucity of literature and very few studies done on the high incidence of NPC among the Nagas in Nagaland, the present study was undertaken to understand and examine the experiences and perceptions of patients diagnosed with NPC and efforts were made to draw on their experiences with cancer care treatment through the thematic analysis of the ten in-depth interviews conducted. The patient's experiences with anxiety, fear, and distress due to NPC, its impact on the reconstruction of self, the coping mechanisms they develop in the form of resilience, personal attributes of hope and optimism, and the impact of religion and prayers in helping them deal with their disease are discussed in the paper. [ABSTRACT FROM AUTHOR]

Medical school clerkship offers third year medical students multiple opportunities to acquire clinical experience through real patient interactions and integration into the healthcare teams of different specialities. As part of the general surgery rotation, medical students are invited to scrub in to assist with surgeries—a chance to simultaneously gain medical knowledge while developing technical skills. They learn that there is a possibility of inflicting harm to the patient at every step of any surgery; from making the first skin incision to tying up the final suture, the importance of staying alert is emphasized until the patient is transferred out of the operating room in stable condition. However, the obligation of a physician to do no harm extends beyond the surgery. In this reflection, a third year medical student discusses her experience during an hours-long Whipple procedure. She reflects on the impact of a cancer diagnosis on a patient's identity and narrative and comments on the necessity of maintaining a balance between offering medical guidance to patients and offering the space for them to express their unique illness experience. [ABSTRACT FROM AUTHOR]

When we are ill, what helps us recover? What constitutes disease, what legitimates it and what role do subjective complaints play? A medicine that focuses on measuring and correcting facts but ignores individual illness experience and context wastes diagnostic and therapeutic potential. [ABSTRACT FROM AUTHOR]

Living with a childhood chronic disease can be challenging, especially if the diagnosis involves a rare condition. This study sought to elucidate how the diagnosis of a rare disease, as compared to a common, chronic condition, may influence maternal experiences of childhood illness. We conducted face-to-face, semi-structured interviews with 26 mothers of children treated in a pediatric hospital in the province of Lecco, Italy. Half of the participants had a child diagnosed with Bartter syndrome (BS), and the rest had a child suffering from celiac disease (CD). Interviews were recorded, transcribed, and analyzed using an inductive thematic approach. We identified three main themes from the analysis of our data: (1) disrupted normality and the need to know, (2) reconstructing normality, and (3) acting "normal." Although most participants experienced the disclosure of diagnosis as a relief, processes that facilitated normality reconstruction in celiac families, notably access to appropriate information, social support, and personal contact with comparison others, were found to be important stressors for mothers living with BS.Conclusion: This comparative qualitative study provides evidence on how well-known problems associated with the rarity of childhood diseases impact on families' efforts to cope with the illness and regain a sense of normality. What is Known: • Families living with a rare disease have been found to experience a range of common problems, directly linked to the rarity of these pathologies. What is New: • Maximization of both emotional and instrumental social support, through provision of appropriate information or establishment of disease-specific support groups, could greatly contribute to rare disease families' efforts to cope with childhood illness and regain a sense of normality. [ABSTRACT FROM AUTHOR]

Purpose: The main objective of this study is to gain a deeper understanding of how patients suffering from chronic myeloid leukemia (CML) cope with their illness. The study aims to reconstruct the subjective meaning-making process related to CML in order to gain insights into the impact the disease has on patients' emotions and everyday lives, as well as to explore the psychological impact of their being presented with the chance to suspend their therapy and recover from the disease.Methods: Data were gathered from a qualitative study conducted in Italy on 158 Italian CML patients. Basing the study on the narrative inquiry approach, the patients were required to describe their patient journey in a qualitative narrative diary. These contained prompts to elicit the free expression of their needs, expectations, and priorities. A lexicographic analysis was carried out with T-LAB software and in particular a thematic analysis of elementary contexts (TAECs) and a word association analysis (WAA).Results: The TAEC detected four thematic clusters related to two factors (temporal frame and contextual setting) that explained the variance among the narratives. The WAA evidenced a wide variety of emotions, both positive and negative, as patients reacted to the possibility of interrupting their therapy.Conclusions: A better understanding of patients' experiences can offer insights into promoting the development of more sustainable healthcare services and into therapeutic innovation aimed at improving patients' quality of life and at engaging them more in their treatment. The findings of this study can also help make medical professionals more aware of the patient's burden and help them identify potential interactions and emotional levers to improve clinical relationships. [ABSTRACT FROM AUTHOR]

Illness is a disruptive experience that requires high-quality care. The best evidence-based medical treatment risks losing some of its efficacy, however, when patients feel misunderstood when faced with the complexity of their experiences. They might stop treatment, refuse to disclose relevant information or seek unsound alternatives. A narrative-based approach to health care understands the patient's case history as a narrative that can be read or analyzed like a story. In other words, this approach honors individual illness experiences through the stories that patients tell. While programs that train 'narrative competence' have been successfully implemented in medical education, an application to pharmaceutical training is missing so far. We argue for the necessity to complement evidence-based pharmaceutical practice with narrative-based approaches to ensure high-quality care. Using the perspective of a pharmacist in a case scenario, we exemplify the centrality of "narrative pharmacy" for improving the quality and safety of pharmaceutical health care. [ABSTRACT FROM AUTHOR]

Research into explanatory models of disease and illness typically explores people's conceptual understanding, and emphasizes differences between patient and provider models. However, the explanatory models framework of etiology, time and mode of onset of symptoms, pathophysiology, course of sickness, and treatment is built on categories characteristic of biomedical understanding. It is unclear how well these map onto people's lived experience of illness, and to the extent they do, how they translate. Scholars have previously studied the experience of people living with HIV through the lenses of stigma and identity theory. Here, through in-depth qualitative interviews with 32 people living with HIV in the northeast United States, we explored the experience and meanings of living with HIV more broadly using the explanatory models framework. We found that identity reformation is a major challenge for most people following the HIV diagnosis, and can be understood as a central component of the concept of course of illness. Salient etiological explanations are not biological, but rather social, such as betrayal, or living in a specific cultural milieu, and often self-evaluative. Given that symptoms can now largely be avoided through adherence to treatment, they are most frequently described in terms of observation of others who have not been adherent, or the resolution of symptoms following treatment. The category of pathophysiology is not ordinarily very relevant to the illness experience, as few respondents have any understanding of the mechanism of pathogenesis in HIV, nor much interest in it. Treatment has various personal meanings, both positive and negative, often profound. For people to engage successfully in treatment and live successfully with HIV, mechanistic explanation is of little significance. Rather, positive psychological integration of health promoting behaviors is of central importance. [ABSTRACT FROM AUTHOR]

The first decisive steps of medicine towards becoming a science in its present shape happen to coincide with "the rise of the novel" in the eighteenth century. Before this well known and in our days still growing scientific specialization of medicine, the connections between literature and medicine were both many and close. By reading and analyzing a contemporary novel, The Death of a Beekeeper by the Swedish author Lars Gustafsson (1978), this article is an attempt to explore to which extent a fictional narrative about a unique case of cancer may illuminate challenges associated with the experience of serious illness. Our claim is that medicine might draw wisdom from literature, its ability to create connections through narrative, to illuminate the complexity of ethical dilemmas, and to intertwine symptoms, life stories, and contexts. We argue that by being in the company of literary narratives and philosophical questions, physicians as well as other health care professionals may acquire clinically relevant skills which help them reach the ethically defined goals of their profession. [ABSTRACT FROM AUTHOR]

Medical school clerkship offers third year medical students multiple opportunities to acquire clinical experience through real patient interactions and integration into the healthcare teams of different specialties. As part of the general surgery rotation, medical students are invited to scrub in to assist with surgeries—a chance to simultaneously gain medical knowledge while developing technical skills. In what is often an impersonal experience for most patients, students are encouraged to consider the patient's perspective throughout their surgical journey from the pre-operative to post-operative stages. In this reflection, a third year medical student discusses her experience on the moments before breast surgery. From the point of view of a breast cancer patient, she reflects on the impact of a mastectomy on a patient's identity and comments on the importance of empathy in helping a patient grapple with their unique illness experience. [ABSTRACT FROM AUTHOR]

This essay imagines a working complementarity between religion and medicine, based on a discussion of two images: Marc Chagall's depiction of Jacob being blessed by an angel and a photo of an intensive care unit. The question is whether medicine necessarily disenchants, in Weber's sense. I argue there are other ways to understand the multiple agencies at work in the ICU photo. [ABSTRACT FROM AUTHOR]

Focusing on one family from a study of dual-earner middle-class families carried out in Los Angeles, California, this article draws on interview and video-recorded data of everyday interactions to explore illness and healing as embedded in the microcultural context of the Morris family. For this family, an important aspect of what is at stake for them in their daily lives is best understood by focusing on 9-year-old Mark, who has been diagnosed with attention-deficit/hyperactivity disorder (ADHD). In this article, we grapple with the complexity of conveying some sense of how Mark’s condition is experienced and relationally enacted in everyday contexts. Through illuminating connections between lives as lived and lives as told, we explore the narrative structuring of healing in relation to Mark’s local moral world with the family at its center. We examine how his parents understand the moral consequences of the child’s past for his present and future, and work to encourage others to give due weight to his troubled beginnings before this child joined the Morris family. At the same time, we see how the Morris parents act to structure Mark’s moral experience and orient to a desired future in which Mark’s “success” includes an appreciation of how he is accountable to others for his actions. Through our analyses, we also seek to contribute to discussions on what is at stake in everyday life contexts for children with ADHD and their families, through illuminating aspects of the cultural, moral and relational terrain that U.S. families navigate in contending with a child’s diagnosis of ADHD. Further, given that ADHD is often construed as a “disorder of volition,” we seek to advance anthropological theorizing about the will in situations where volitional control over behavior is seen to be disordered. [ABSTRACT FROM AUTHOR]

The multiaxial system of operational psychodynamic diagnosis (OPD) is based on five axes covering illness experience and prerequites for treatment, interpersonal relations, conflict, structure and symptomatology following ICD-10, Chapter V (F). The new version, OPD-2, has developed from a purely diagnostic system into one including a set of tools and procedures for treatment planning and for measuring change, as well as for determining the appropriate main focuses of treatment and developing appropriate treatment strategies. Focusing on axis I of the system, the concept and content of OPD are introduced and data concerning aspects of reliability and validity are discussed. [ABSTRACT FROM AUTHOR]