Medical Narratives Research Articles

Comic-based consenting on patient-reported experience and outcome measures for transfemoral aortic valve implantation

Abstract Background The impact of an improved patient informed consent (IC) before transcatheter aortic valve implantation (TAVI) on patient-reported experience and outcome measures (PREMs and PROMs) as well as on clinical outcomes remains unclear. Purpose To investigate patient satisfaction, PREMs, PROMs and clinical outcomes in patients receiving additional illustrative graphic-based IC (comic group) compared to conventional IC (control group) for TAVI at two tertiary care centers as part of a randomised controlled trial ("TAVI-COMIC study"). Methods Adult patients undergoing elective TAVI were enrolled. Patient satisfaction and PREMs were assessed after providing IC, PROMs at 90 days after TAVI and clinical safety outcomes within 7 days after TAVI (Figure). Results Only 48 (32%) of all patients read the official usual patient information sheet. Of 299 patients undergoing TAVI, comic-based IC was performed in 152 (51%) patients. Patient satisfaction was significantly higher (29 [23-32] vs 25 [22-30] of a maximum of 32 points in the validated Client Satisfaction Questionnaire [CSQ], p<0.001) and anxiety was lower (34 [25-51] vs 39 [29-55], p<0.001 in the validated Spielberger State-Trait-Anxiety Inventory [STAI]) in the comic group. 92 (61%) patients in the comic group felt "relaxed" prior to the procedure compared to only 44 (30%) patients receiving conventional IC (p<0.001). 91 (60%) were "very satisfied" with the delivered patient IC compared to 28 (19%) patients in the control group (p<0.001). PROMs at 90 days were assessed in a subgroup of 198 (66% of total cohort) patients: The comic group had similar PROMs as the control group (e.g. general health condition, walking ability and rate of dizziness, syncope, helplessness, depression, dyspnea or angina). Clinical outcomes, such as bleeding, pneumonia, stroke, delirium, or TAVI unit and hospital length of stay, were similar in both groups. Conclusion Use of an alternative IC approach, such as medical graphic narratives, might significantly improve patient satisfaction and PREMs, while facilitating similar PROMs and procedural safety as conventional treatment strategies.

“No Rest for the Wicked”: R.L. Stevenson’s “The Body Snatcher” and the Resisting Corpse of Victorian Resurrectionism

The subversive semantic power of the revenant or reanimated corpse in Victorian literature serves as a crucial indicator of the era’s preoccupation with the body as a cultural domain. Deeply entwined with the uneasy relationship between the advancement of anatomical science and criminality, the body is marked as the site of fraught boundaries imbued with social order and its attendant anxieties. This paper explores the narrative strategies of Stevenson’s short story “The Body Snatcher” (1884) where resurrectionist motifs resist the enforcement of the condition of anonymity that was entailed by anatomical dissection and signal the impossibility of closure through the trope of return of the repressed sub specie of the dissected cadaver. This dual ‘resistance’ culminates in the symbolism of the revenant corpse’s movement, abandoned in its progress towards the future. Stevenson’s story reveals a hermeneutic complexity that intertwines the themes of contamination, ethical collusion, commodification of the dead body through the entanglement of medical practice and narrative opacity. This offers further insights into the Victorian resurrectionist imagination, in the light of that ‘aura’ of the corpse which the regulation of the 1834 New Poor Amendment Act failed to dispel.

Ethical Dilemma and Technology Misuse in Medical Fiction of Rebecca Skloot’s The Immortal Life of Henrietta Lacks

The rapid advancement of medical technology has introduced new ethical quandaries that are increasingly explored within medical fiction. To explore these ethical misconducts and implications of technology misuse, the study selects the medical novel Rebecca Skloot's The Immortal Life of Henrietta Lacks. This study uses the Neutralization Theory of Sykes and Matza to examine the moral arguments and ethical conundrums raised in Rebecca Skloot's The Immortal Life of Henrietta Lacks. In that, the novel investigates how authors use the medium of fiction to not only highlight the profound ethical questions surrounding the development and application of new technologies but also to expose the fragility of the systems and individuals tasked with wielding such power. This selected medical narrative serves as cautionary tales that force readers to confront the moral and philosophical implications of technological progress in the medical field, calling doctors to consider the delicate balance between scientific advancement and preserving human dignity, autonomy, and the sanctity of life.

MeSsy identities: an ethnographic exploration of a multiple sclerosis support group.

The following is an ethnographic study of a multiple sclerosis (MS) support group. This study underscores the importance of access to counternarratives for individuals with chronic illness and disabilities through organizational structures such as support groups. This work can help those with disabilities/chronic diseases, such as MS, because it provides a space for discussing the communicative forces that shape individual experiences of living with disability and chronic illness. Thus, this study seeks to understand how pharmaceutical representatives' and doctors' grand medical narratives influence the communication of MS support group attendees and their construction/performance of self. This study shows that participation in support groups provides a space to renegotiate identity in which new forms of self can develop external to the dominant discourse. The support group becomes a space where counternarratives of empowerment develop in the face of master narratives.

Investigating feelings of imposterism in first-year medical student narratives.

Imposter phenomenon (IP), feeling as if a person does not belong, has been reported in medical students at various rates. In medical literature, this phenomenon has often been defined as a 'syndrome', but other studies have described it as a dynamic experience that can have various impacts on different people at different time points. Although studies have linked IP with other phenomena such as burnout in residents and physicians, no studies have examined its aetiology nor how these feelings are experienced by medical students. With the use of social identity theory as a framework, the authors analysed 233 reflective essays for elements of IP across eight cohorts of medical students from two institutions. Students responded to a prompt that asked: 'What was one part of your identity that you thought you would have to change in order to become a physician?' Included reflections were analysed using the framework method. Elements of IP were identified in 121 reflections (52%) and were categorised into three major themes: (1) Comparing oneself to an idealised image of a medical student, (2) Comparing oneself to an idealised image of a physician and (3) Concerns about presentation of self to others. Each theme contained two or more sub-themes. Commonly, students discussed how their own personality traits, experiences, backgrounds and identities cast doubt on their sense of belonging in medicine. The results of this study were consistent across both institutions, suggesting that imposter feelings are common among all first-year medical students. However, the extent of the impact of these feelings on their identity formation depends on the individual lived experiences of students and the context in which these feelings arise. Encouraging reflective journaling and sharing of stories from all stages of education can normalise imposter feelings during the development of the professional identity as a physician.

Reappraisal of the etymology of tendo Achillis: Achilles, the aggressor or the sufferer?

This study critically reassesses the etymology of the tendo Achillis, examining its connection to Achilles as depicted in classic epics. It challenges the interpretation by Joseph Hyrtl, first presented in the 19th century and still widely accepted, which credits Philippus Verheyen with the introduction of Achilles-related terminology in the late 17th century. Through an extensive review of anatomical publications from the 16th to the early 18th century across Western Europe, categorized into four distinct periods, this study investigates the origins of the nomenclature for the distal tendon of the triceps surae (DTTS = tendo calcaneus), including both the terminology and the narrative contexts beyond its anatomical functions. The findings reveal that names associated with Achilles predate Verheyen, contradicting Hyrtl's timeline, and suggesting a more intricate association with the figure of Achilles. This not only illuminates the development of one of the most recognized anatomical eponyms but also enhances our understanding of the interplay between medical terminology and cultural narratives.

Obstetric violence and consent during pregnancy and childbirth: the Eighth Amendment and its impact on the Irish maternity system

ABSTRACT In the run up to the referendum on abortion in Ireland in 2018, women shared experiences of being denied abortion care through social media. The ‘In Her Shoes’ dataset is a collection of archived Facebook posts in which women shared their experiences of obstetric coercion, lack of information and lack of consent to medical procedures during pregnancy and childbirth. Using women’s testimonies from the In Her Shoes database (https://repository.dri.ie/catalog/wm11nd02p), this research will critically analyse these stories. The paper will analyse women’s experiences in maternity care pre-2018 before the constitutional change. The article includes experiences of being denied treatment because of their pregnancy, being forced to continue the pregnancy when there was a risk to the woman’s health, as well as a lack of information and lack of consent to medical procedures. The article puts women’s experiences at the forefront of the research and analyses their experiences within a medical narrative framework. It argues that the Eighth Amendment, not just denied abortion care, but contributed towards a medical culture in which the patient’s experience was not central to that care. Since the removal of the Eighth Amendment, we should move towards a patient-centered care approach to maternity care in Ireland.

Medical narrative: Finding my new “Normal” with Sjogren's Syndrome

Medical narrative: Finding my new “Normal” with Sjogren's Syndrome

“This will keep me happy for weeks”: care objects, affect and graphic medicine

Looking beyond anthropocentric care relationships reveals nuanced levels of interdependence among human and non-human entities. Attention to these heterogeneous inter-relationships illuminates the subtle and visceral affective intensities among diverse participants,...

‘This space inside’: An art-based autoethnographic exploration of the hysterectomy experience

This article presents an art-based autoethnographic account of the hysterectomy experience, from the perspective of a perinatal therapist based in a large maternity hospital. The key questions explored include the ways in which a sense of bodily and psychic integrity can be reclaimed post-operatively, alongside the integration of losses associated with a hysterectomy. The article is structured as an autoethnographic exploration, derived from a visual diary incorporating image-making, hand-stitching and writing. Four key themes are discussed with reference to specific images: ‘Navigating disruption’, ‘Adjusting to a changed body’, ‘Accommodating losses: Emerging into Otherhood’ and ‘Renewal: Recovering an inner space’. This personal account is considered against wider cultural and sociopolitical discourses which inform our constructions of femininity. The article offers a counterpoint to medical narratives which may assume recovery from a hysterectomy to be synonymous only with physical recuperation.

INTERSECTING MEDICAL AND LEGAL RESPONSIBILITIES IN INDONESIA

The primary objective of this research is to illuminate the evolution of medical responsibility in Indonesia over time. By examining the complex interplay between law and medicine, social transformations, medical advancements, and shifting legal perspectives, this study seeks to enhance understanding of medical responsibility in Indonesia. Utilizing an interdisciplinary approach grounded in the "Social Construction of Technology" (SCOT) theory, the research employs historical analysis to trace the origins of medical responsibility, its evolution, and the impact of various legal frameworks and cultural shifts in medicine. The study integrates qualitative data from legal and medical sources to provide a comprehensive view. Findings reveal that the evolution of medical responsibility in Indonesia is closely tied to the adoption of, and subsequent resistance to, entrenched notions within medical discourse. The research identifies a trend towards greater judicial independence from traditional medical narratives and an increased willingness to scrutinize established medical practices, particularly in the context of technological advancements. By situating these developments within Indonesia's historical and cultural context, this research enriches the understanding of medical liability's progression and ongoing transformation within a dynamic healthcare landscape. It addresses gaps in existing literature and offers a nuanced perspective on the interaction between law and medicine concerning medical liability.

Using natural language processing to link patients' narratives to visual capabilities and sentiments.

Analyzing narratives in patients' medical records using a framework that combines natural language processing (NLP) and machine learning may help uncover the underlying patterns of patients' visual capabilities and challenges that they are facing and could be useful in analyzing big data in optometric research. The primary goal of this study was to demonstrate the feasibility of applying a framework that combines NLP and machine learning to analyze narratives in patients' medical records. To test and validate our framework, we applied it to analyze records of low vision patients and to address two questions: Was there association between patients' narratives related to activities of daily living and the quality of their vision? Was there association between patients' narratives related to activities of daily living and their sentiments toward certain "assistive items"? Our dataset consisted of 616 records of low vision patients. From patients' complaint history, we selected multiple keywords that were related to common activities of daily living. Sentences related to each keyword were converted to numerical data using NLP techniques. Machine learning was then applied to classify the narratives related to each keyword into two categories, labeled based on different "factors of interest" (acuity, contrast sensitivity, and sentiments of patients toward certain "assistive items"). Using our proposed framework, when patients' narratives related to specific keywords were used as input, our model effectively predicted the categories of different factors of interest with promising performance. For example, we found strong associations between patients' narratives and their acuity or contrast sensitivity for certain activities of daily living (e.g., "drive" in association with acuity and contrast sensitivity). Despite our limited dataset, our results show that the proposed framework was able to extract the semantic patterns stored in medical narratives and to predict patients' sentiments and quality of vision.

Crafting Disability: Re-envisioning Indian Textile Traditions

This article examines the work of two contemporary feminist disabled artists who are originally from India, and who currently live and work in the United States. Bhavna Mehta and Sugandha Gupta both work in textiles, and identify as women with disabilities. Mehta embroiders X-rays of her own body that capture her medical condition as someone with polio and who uses a wheelchair, where she uses embroidery skills passed down to her by female family members in India. Mehta rescripts the medical narratives of her condition so that her disability is accorded a literal and metaphorical personal touch, antithetical to the often-dehumanizing imagery that pervades within the medical industrial complex. Gupta, who was born with albinism, which also impacted her vision at birth, uses felt and other materials inspired by craft research in India to create sensorial fabrics that disrupt the hierarchy of the senses, with an emphasis on the generative tactile properties of objects. By analyzing the work of these two artists, I not only aim to introduce underrepresented feminist art histories, expanding the literature of the Global South, but I also wish to offer an argument that these artists are crafting new feminist forms of disability and re-envisioning Indian textile traditions.

Medical Student Narrative Evaluations of Resident Teachers: A Qualitative Study (P4-7.001)

Medical Student Narrative Evaluations of Resident Teachers: A Qualitative Study (P4-7.001)

Does Pollyanna hypothesis hold true in death narratives? A sentiment analysis approach

Pollyanna hypothesis claims that human beings have a universal tendency to use positive words more frequently and broadly than negative words. The present study aims to test Pollyanna hypothesis in medical death narratives at both lexical and text levels by using sentiment analysis and emotion detection methods, and to qualitatively analyze the contextual use of emotion words to deepen the understanding of doctors' emotions. Sentiment analysis showed a strong token-based linguistic positivity and a weak type-based negativity bias at the lexical level, and a general positivity bias at the text level, despite the gender of the doctors. Emotion detection discovered three prominent emotions of “joy”, “sadness”, and “anger”, and a greater diversity of negative emotions in contrast to positive emotions in medical death narratives. Contextual analysis revealed that emotion words associated with joy were primarily observed in contexts related to doctors' actions and behaviors aiming to benefit others and promote social wellbeing. Emotion words associated with sadness and anger were chiefly employed to describe situations involving patients' death and doctors' attitudes towards death. The results confirm Pollyanna hypothesis at both token-based lexical level and text level and falsify the hypothesis at type-based lexical level. Possible explanations are explored by contextual analysis, and theoretical analysis from the perspectives of cognitive linguistics and social psychology. The findings are expected to enrich the understanding of Pollyanna hypothesis as well as the junior doctors' emotional responses to clinical deaths.

Multimodal learning for temporal relation extraction in clinical texts.

This study focuses on refining temporal relation extraction within medical documents by introducing an innovative bimodal architecture. The overarching goal is to enhance our understanding of narrative processes in the medical domain, particularly through the analysis of extensive reports and notes concerning patient experiences. Our approach involves the development of a bimodal architecture that seamlessly integrates information from both text documents and knowledge graphs. This integration serves to infuse common knowledge about events into the temporal relation extraction process. Rigorous testing was conducted on diverse clinical datasets, emulating real-world scenarios where the extraction of temporal relationships is paramount. The performance of our proposed bimodal architecture was thoroughly evaluated across multiple clinical datasets. Comparative analyses demonstrated its superiority over existing methods reliant solely on textual information for temporal relation extraction. Notably, the model showcased its effectiveness even in scenarios where not provided with additional information. The amalgamation of textual data and knowledge graph information in our bimodal architecture signifies a notable advancement in the field of temporal relation extraction. This approach addresses the critical need for a more profound understanding of narrative processes in medical contexts. In conclusion, our study introduces a pioneering bimodal architecture that harnesses the synergy of text and knowledge graph data, exhibiting superior performance in temporal relation extraction from medical documents. This advancement holds significant promise for improving the comprehension of patients' healthcare journeys and enhancing the overall effectiveness of extracting temporal relationships in complex medical narratives.

Natural language processing to identify lupus nephritis phenotype in electronic health records

BackgroundSystemic lupus erythematosus (SLE) is a rare autoimmune disorder characterized by an unpredictable course of flares and remission with diverse manifestations. Lupus nephritis, one of the major disease manifestations of SLE for organ damage and mortality, is a key component of lupus classification criteria. Accurately identifying lupus nephritis in electronic health records (EHRs) would therefore benefit large cohort observational studies and clinical trials where characterization of the patient population is critical for recruitment, study design, and analysis. Lupus nephritis can be recognized through procedure codes and structured data, such as laboratory tests. However, other critical information documenting lupus nephritis, such as histologic reports from kidney biopsies and prior medical history narratives, require sophisticated text processing to mine information from pathology reports and clinical notes. In this study, we developed algorithms to identify lupus nephritis with and without natural language processing (NLP) using EHR data from the Northwestern Medicine Enterprise Data Warehouse (NMEDW).MethodsWe developed five algorithms: a rule-based algorithm using only structured data (baseline algorithm) and four algorithms using different NLP models. The first NLP model applied simple regular expression for keywords search combined with structured data. The other three NLP models were based on regularized logistic regression and used different sets of features including positive mention of concept unique identifiers (CUIs), number of appearances of CUIs, and a mixture of three components (i.e. a curated list of CUIs, regular expression concepts, structured data) respectively. The baseline algorithm and the best performing NLP algorithm were externally validated on a dataset from Vanderbilt University Medical Center (VUMC).ResultsOur best performing NLP model incorporated features from both structured data, regular expression concepts, and mapped concept unique identifiers (CUIs) and showed improved F measure in both the NMEDW (0.41 vs 0.79) and VUMC (0.52 vs 0.93) datasets compared to the baseline lupus nephritis algorithm.ConclusionOur NLP MetaMap mixed model improved the F-measure greatly compared to the structured data only algorithm in both internal and external validation datasets. The NLP algorithms can serve as powerful tools to accurately identify lupus nephritis phenotype in EHR for clinical research and better targeted therapies.

Analysis of Anonymous Student Narratives About Experiences with Emergency Medicine Residency Programs.

Academic emergency medicine (EM) communities have viewed anonymous online communities (AOC) such as Reddit or specialty-specific "applicant spreadsheets" as poor advising resources. Despite this, robust EM AOCs exist, with large user bases and heavy readership. Insights about applicants' authentic experiences can be critical for applicants and program leadership decision-making. To date, there are no EM studies to qualitatively assess EM AOC narratives during the application cycle. Our goal was to perform a qualitative analysis of students' EM program experiences through a publicly available AOC. This was a qualitative analysis of a publicly available, time-stamped, user-locked AOC dataset: "Official 2020-2021 Emergency Medicine Applicant Spreadsheet." We extracted and then de-identified all data from selected sub-sheets entitled "Virtual Interview Impressions" and "Rotation Impressions." Four investigators used constant comparative method to analyze the data inductively, and they subsequently met to generate common themes discussed by students. Preliminary thematic analysis was conducted on a random sample of 37/183 (20%) independent narratives to create the initial codebook. This was used and updated iteratively to analyze the entire narrative set consisting of 841 discrete statements. Finally, two unique codes were created to distinguish whether the identified sub-themes, or program attributes, were likely "modifiable" or "non-modifiable." We identified six major themes: living and working conditions; interpersonal relationships; learning experiences, postgraduate readiness, and online/virtual supplements. Common sub-themes included patient population (13%); resident personality (7%); program leadership personality (7%); relationship with faculty/leadership (6%); geography (4%); practice setting (4%); program reputation (4%), and postgraduate year-3 experiences (4%). Modifiable sub-themes outnumbered non-modifiable sub-themes, 60.7% to 39.3%. In this analysis of selected medical students' narratives in an AOC, the majority of identified themes represented topics that may serve as external feedback for EM residency programs and their clerkships. Selective use of AOCs may set a precedent for future program assessments by applicants and inform program leadership of important programmatic elements in the eyes of applicants. It elucidates important themes in their interactions or learning experiences with programs and creates opportunities for learner-centric program improvement.

Whose Authority Drives the Narrative?: Framing the Spread of Mountain Pine Beetle in Canadian News Media

ABSTRACT Climate change is facilitating the expansion of biorisks (invasive species, viruses, diseases) into new environments. While news media are a key site where expert authorities communicate about risks in the public sphere, there is limited understanding of how media narratives change as biorisks spread into new areas. We use mountain pine beetle (Dendroctonus ponderosae) in Canada as a case study to examine how narratives in media coverage evolved as outbreaks intensified and spread eastward. Medical narratives were more common in British Columbia, where the beetle is endemic, and war narratives were more common in Alberta, where the beetle spread and is considered a “native invasive” species. Narrative framing in both places was driven by journalists, while quotes by authoritative sources lent support to journalistic framing. These findings demonstrate that affective narrative frames are widespread in environmental crisis communication and that framing of crises changes dynamically based on geographic context.

The Symbiosis of Language(s), Literature, and the Medical Humanities

This Special Collection focuses on the ‘pathological body’ in literature, from the socio-cultural anxieties around the human body to the sick body’s relationship with language(s) and translation. The six articles—from Italian, German, Spanish, French literatures—explore posthuman female body-subjectivity; catalepsy as a framework to reorient traditional gender narratives; the violence of maintaining a socially acceptable subjecthood; the body as language in creating identity; the emotional-psychological coupled with the environment; and translation as an epistemic category. The concept of the ‘pathological body’ arose from the professionalisation of European medicine from the mid-1800s, and literary texts and medical theories travelled across national boundaries in a mutually reinforcing interconnection that globally positioned bourgeois masculinity at the top of a medical-humanistic hierarchy. This Introduction calls for the collaboration of European Modern Languages scholars to begin undoing the consequent harmful models. Understanding that medical paradigms are formed through credible stories, the first section highlights literature as an activist (Thornber, 2013) and ethical site of knowledge that can deconstruct an apparently immutable medical narrative. Section II gives an historical overview of the rise of clinical medicine and its creation of the idealised man and woman, and examines the repercussions of not fulfilling these normative categories. Section III discusses the overlap of nineteenth-century scientific and literary texts, and the danger of translating ‘sickly’ texts. Section IV notes the signal importance of language and considers how non-normative and racialised identities can ‘write back’ against medical paradigms. Banner image: Max Simon Nordau, Entartung, Vol. 2, p. 401. 1893 edition. Berlin: C. Duncker. Image taken from Google Books.