Narrative medicine to investigate the quality of life and emotional impact of inherited retinal disorders through the perspectives of patients, caregivers and clinicians: an Italian multicentre project.

OBJECTIVES: Although inherited retinal disorders (IRDs) related to the gene encoding the retinal pigment epithelium 65kD protein (RPE65) significantly impact the vision-related quality of life (VRQoL), their emotional and social aspects remain poorly investigated in Italy. Narrative Medicine (NM) reveals the more intimate aspects of the illness experience, providing insights into clinical practice. DESIGN AND SETTING: This NM project was conducted in Italy between July and December 2020 and involved five eye clinics specialised in IRDs. Illness plots and parallel charts, together with a sociodemographic survey, were collected through the project's website; remote in-depth interviews were also conducted. Narratives and interviews were analysed through NVivo software and interpretive coding. PARTICIPANTS: 3 paediatric and 5 adult patients and eight caregivers participated in the project; 11 retinologists globally wrote 27 parallel charts; 5 professionals from hospital-based multidisciplinary teams and one patient association member were interviewed. RESULTS: Findings confirmed that RPE65-related IRDs impact VRQoL in terms of activities and mobility limitations. The emotional aspects emerged as crucial in the clinical encounter and as informative on IRD management challenges and real-life experiences, while psychological support was addressed as critical from clinical diagnosis throughout the care pathway for both patients and caregivers; the need for an IRDs 'culture' emerged to acknowledge these conditions, and therefore, promoting diversity within society. CONCLUSIONS: The project was the first effort to investigate the impact of RPE65-related IRDs on the illness experience through NM, concomitantly addressing the perspectives of paediatric and adult patients, caregivers and healthcare professionals and provided preliminary insights for the knowledge of RPE65-related IRDs and the clinical practice.

A model for abolitionist narrative medicine pedagogy.

To use narrative medicine as a means for action towards social justice in medical education, we need a renewal of our pedagogical methods that grapples not just with the worlds concocted within a text, but also our own world beyond the text. We propose a model for narrative medicine pedagogy that is oriented towards abolition. First, the composition of the classroom and syllabus must employ radical inclusion through recruitment of diverse voices and selection of diverse texts. After a traditional close reading is initiated, conscious expansion should take place through introduction of a text's context and current social structures. Whenever internal and external conflicts arise, active self-interrogation should be encouraged through José Esteban Muñoz's 'disidentification'.We present relevant critiques of narrative medicine, case studies from workshop experiences, and close readings of selected narrative medicine texts to unmask limitations in the standard narrative medicine workshop format and illustrate the utility of our abolitionist model. The model we propose offers methods for disrupting long-standing patterns of inclusion (and exclusion) and radically transforming the structure of spaces and ideas produced within them. When new texts are added to the syllabus, they should be accompanied by hermeneutics that can adequately attend to them. Abolitionist narrative medicine pedagogy should stimulate practitioners to examine their own role in social structures that surround the text and the setting of close reading and, ultimately, to dismantle harmful structures. We offer strategies for confronting discomfort without requiring an abandonment of identity, context or content. Instead, holding complexity works towards the long-term aim of transforming practitioners to think critically about structural violence that prevents universal and equitable access to compassionate healthcare. Using this model for abolition, we hope practitioners of narrative medicine will be equipped with more dynamic tools to engage with texts and patients within and beyond the scope of the narrative medicine workshop.

Stroke and COVID-19: The Value of Narrative Medicine.

Stroke and COVID-19 are both traumatic and life-altering experiences that are marked by uncertainty, fear, and medical intervention. The devastation that stroke and COVID-19 oppress on an individual and a population is well established, and these traumas are potently magnified in the troughs of the COVID-19 pandemic. Furthermore, stroke has been shown to be a potential complication of COVID-19 infection, and while there is global controversy regarding this finding, it is undeniable that there are patients across the world presenting with both conditions concurrently. Thus, the topic of isolated stroke and the co-occurrence of stroke and COVID-19 amidst the pandemic both warrant considerable investigation on both a basic science level and a humanistic level. This opinion article advocates for a narrative medicine approach to better explicate the intertwining of stroke and COVID-19. Interviewing patients who presented with both stroke and COVID-19 as well as patients who present with stroke during the pandemic will provide the opportunity to gather and juxtapose individual illness experiences, including encounters with the health care system, relationship with care teams and care takers, recovery, and insights into the future. Creating, analyzing, and comparing such an anthology of illness narratives of the 2 patient populations will offer a unique understanding into the experience of different, yet over-lapping, medical traumas in an unprecedented time. With this deeper appreciation of patient accounts, the health care system can better recognize how to provide for future patients who present specifically with stroke or stroke and COVID-19. However, more broadly, this study can also afford insight into how the health care system can better provide for and support patients who present with complex diagnoses in the context of a complex healthcare system, which most probably will operate under the effects of the pandemic for time to come as well as other, future complicating factors.

Initiating narrative medicine into dental education: Opportunity, change, and challenge.

Recently, the patient-centered and comprehensive dental treatment are emphasized as the same important competency as traditional clinical skill training in dental education. It is a silver lining to reorganize current dental education and redefine the role of dentistry to dentist, patient, and society. Narrative medicine has emerged as a variant from medical humanities and takes inspiration from philosophy, literature, poetry, art, ethics, and social sciences. Narrative medicine adds humanistic care with empathy and listening to patients in daily care. In this article, we introduce the definition of narrative medicine, the concept of narrative dentistry, implementation of narrative medicine into dental education, and challenges in initiating narrative dentistry. During the current COVID-19 pandemic, it also affords the opportunity to initiate narrative medicine into dental education, dentist could emerge to heal patient holistically, but not simply eliminate oral diseases.

Culture Linked to Increasing Ageism During COVID-19: Evidence From a 10-Billion-Word Corpus Across 20 Countries.

OBJECTIVES: Older adults experience higher risks of getting severely ill from coronavirus disease 2019 (COVID-19), resulting in widespread narratives of frailty and vulnerability. We test: (a) whether global aging narratives have become more negative from before to during the pandemic (October 2019 to May 2020) across 20 countries; (b) model pandemic (incidence and mortality), and cultural factors associated with the trajectory of aging narratives. METHODS: We leveraged a 10-billion-word online-media corpus, consisting of 28 million newspaper and magazine articles across 20 countries, to identify nine common synonyms of "older adults" and compiled their most frequently used descriptors (collocates) from October 2019 to May 2020-culminating in 11,504 collocates that were rated to create a Cumulative Aging Narrative Score per month. Widely used cultural dimension scores were taken from Hofstede, and pandemic variables, from the Oxford COVID-19 Government Response Tracker. RESULTS: Aging narratives became more negative as the pandemic worsened across 20 countries. Globally, scores were trending neutral from October 2019 to February 2020, and plummeted in March 2020, reflecting COVID-19's severity. Prepandemic (October 2019), the United Kingdom evidenced the most negative aging narratives; peak pandemic (May 2020), South Africa took on the dubious honor. Across the 8-month period, the Philippines experienced the steepest trend toward negativity in aging narratives. Ageism, during the pandemic, was, ironically, not predicted by COVID-19's incidence and mortality rates, but by cultural variables: Individualism, Masculinity, Uncertainty Avoidance, and Long-term Orientation. DISCUSSION: The strategy to reverse this trajectory lay in the same phenomenon that promoted it: a sustained global campaign-though, it should be culturally nuanced and customized to a country's context.

Using Narrative Evidence to Convey Health Information on Social Media: The Case of COVID-19.

During disease outbreaks or pandemics, policy makers must convey information to the public for informative purposes (eg, morbidity or mortality rates). They must also motivate members of the public to cooperate with the guidelines, specifically by changing their usual behavior. Policy makers have traditionally adopted a didactic and formalistic stance by conveying dry, statistics-based health information to the public. They have not yet considered the alternative of providing health information in the form of narrative evidence, using stories that address both cognitive and emotional aspects. The aim of this viewpoint paper is to introduce policy makers to the advantages of using narrative evidence to provide health information during a disease outbreak or pandemic such as COVID-19. Throughout human history, authorities have tended to employ apocalyptic narratives during disease outbreaks or pandemics. This viewpoint paper proposes an alternative coping narrative that includes the following components: segmentation; barrier reduction; role models; empathy and support; strengthening self-efficacy, community efficacy, and coping tools; preventing stigmatization of at-risk populations; and communicating uncertainty. It also discusses five conditions for using narrative evidence to produce an effective communication campaign on social media: (1) identifying narratives that reveal the needs, personal experiences, and questions of different subgroups to tailor messaging to produce targeted behavioral change; (2) providing separate and distinct treatment of each information unit or theory that arises on social networks; (3) identifying positive deviants who found creative solutions for stress during the COVID-19 crisis not found by other members of the community; (4) creating different stories of coping; and (5) maintaining a dialogue with population subgroups (eg, skeptical and hesitant groups). The paper concludes by proposing criteria for evaluating the effectiveness of a narrative.

Aging Narratives Over 210 Years (1810-2019).

OBJECTIVES: The World Health Organization launched a recent global campaign to combat ageism, citing its ubiquity and insidious threat to health. The historical context that promoted this pernicious threat is understudied, and such studies lay the critical foundation for designing societal-level campaigns to combat it. We analyzed the trend and content of aging narratives over 210 years across multiple genres-newspaper, magazines, fiction, nonfiction books-and modeled the predictors of the observed trend. METHOD: A 600-million-word dataset was created from the Corpus of Historical American English and the Corpus of Contemporary American English to form the largest structured historical corpus with over 150,000 texts from multiple genres. Computational linguistics and statistical techniques were applied to study the trend, content, and predictors of aging narratives. RESULTS: Aging narratives have become more negative, in a linear fashion (p = .003), over 210 years. There are distinct shifts: From uplifting narratives of heroism and kinship in the 1800s to darker tones of illness, death, and burden in the 1900s across newspapers, magazines, and nonfiction books. Fiction defied this trend by portraying older adults positively through romantic courtship and war heroism. Significant predictors of ageism over 210 years are the medicalization of aging, loss of status, warmth, competence, and social ostracism. DISCUSSION: Though it is unrealistic to reverse the course of ageism, its declining trajectory can be ameliorated. Our unprecedented study lay the groundwork for a societal-level campaign to tackle ageism. The need to act is more pressing given the Covid-19 pandemic where older adults are constantly portrayed as vulnerable.