Parent‐authored memoirs: Lessons in the practice of narrative medicine

2021 ◽  
Author(s):  
John C. Carey
Keyword(s):  
Narrative Medicine

Metagnosis

2020 ◽  
Author(s):  
Danielle Spencer
Keyword(s):  
Real World ◽  
Genetic Test ◽  
Narrative Medicine ◽  
Test Results ◽  
Diagnostic Categories ◽  
Genomic Knowledge ◽  
Blade Runner ◽  
Genetic Test Results ◽  
Scant Attention ◽  
Productive Model

This book identifies and names the phenomenon of metagnosis: the experience of newly learning in adulthood of a long-standing condition. It can occur when the condition has remained undetected (e.g., colorblindness) and/or when the diagnostic categories themselves have shifted (e.g., ADHD). More broadly, it can occur with unexpected revelations bearing upon selfhood, such as surprising genetic test results. This phenomenon has received relatively scant attention, yet learning of an unknown condition is frequently a significant and bewildering revelation, subverting narrative expectations and customary categories. In addressing the topic this book deploys an evolution of narrative medicine as a robust research methodology comprising interdisciplinarity, narrative attentiveness, and creating a writerly text. Beginning with the author’s own experience of metagnosis, it explores the issues it raises—from communicability to narrative intelligibility to different ways of seeing. Next, it traces the distinctive metagnostic narrative arc through the stages of recognition, subversion, and renegotiation, discussing this trajectory in light of a range of metagnostic experiences, from Blade Runner to real-world midlife diagnoses. Finally, it situates metagnosis in relation to genetic revelations and the broader discourses concerning identity. Proposing that the figure of blindsight—drawn from the author’s metagnostic experience—offers a productive model for negotiating such revelations, the book suggests that better understanding metagnosis will not simply aid those directly affected but will also serve as a bellwether for how we will all navigate advancing biomedical and genomic knowledge, and how we may fruitfully interrogate the very notion of identity.

scholarly journals Systemic Lupus Erythematosus before and after COVID-19 Lockdown: How the Perception of Disease Changes through the Lenses of Narrative Medicine

Healthcare ◽  
2021 ◽  
Vol 9 (6) ◽  
pp. 726
Author(s):  
Fulvia Ceccarelli ◽  
Venusia Covelli ◽  
Giulio Olivieri ◽  
Francesco Natalucci ◽  
Fabrizio Conti
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Narrative Medicine ◽  
Good Control ◽  
Final Analysis ◽  
Point Of View ◽  
Systemic Lupus ◽  
Before And After ◽  
Text Content ◽  
Insight Into

Background: The COVID-19 pandemic contributes to the burden of living with different diseases, including Systemic Lupus Erythematosus (SLE). We described, from a narrative point of view, the experiences and perspectives of Italian SLE adults during the COVID-19 emergency, by distinguishing the illness experience before and after the lockdown. Methods: Fifteen patients were invited to participate. Illness narratives were collected between 22 and 29 March 2020 using a written modality to capture patients’ perspectives before and after the COVID-19 lockdown. We performed a two-fold analysis of collected data by distinguishing three narrative types and a qualitative analysis of content to identify the relevant themes and sub-themes reported. Results: Eight narratives included in the final analysis (mean length 436.9 words) have been written by eight females (mean age 43.3 ± 9.9 years, mean disease duration 13.1 ± 7.4 years). Six patients provided a quest narrative, one a chaos and the remaining one a restitution narrative. By text content analysis, we identified specific themes, temporally distinct before and after the lockdown. Before COVID-19, all the patients referred to a good control of disease, however the unexpected arrival of the COVID-19 emergency broke a balance, and patients perceived the loss of health status control, with anxiety and stress. Conclusions: We provided unique insight into the experiences of people with SLE at the time of COVID-19, underlining the perspective of patients in relation to the pandemic.

Applications of Narrative Medicine to Surgical Education

2021 ◽  
pp. 000313482110298
Author(s):  
Carol EH Scott-Conner ◽  
Divyansh Agarwal
Keyword(s):  
Medical Education ◽  
Undergraduate Medical Education ◽  
Surgical Education ◽  
Core Competencies ◽  
Narrative Medicine ◽  
Medical Schools ◽  
Residency Programs ◽  
Surgical Residency

Narrative medicine describes the application of story to medical education and practice. Although it has been implemented successfully in many medical schools as a part of undergraduate medical education, applications to the residency environment have been relatively limited. There are virtually no data concerning the adoption of narrative medicine within surgical residencies. This paper provides a brief introduction to the formal discipline of narrative medicine. We further discuss how storytelling is already used in surgical education and summarize the literature on applications of narrative medicine to residents in other specialties. The relevance of narrative medicine to the ACGME core competencies is explored. We conclude with specific suggestions for implementation of narrative medicine within surgical residency programs.

scholarly journals Brazil’s Community Health Workers Practicing Narrative Medicine: Patients’ Perspectives

2021 ◽  
Author(s):  
Rogério Meireles Pinto ◽  
Rahbel Rahman ◽  
Margareth Santos Zanchetta ◽  
W. Galhego-Garcia
Keyword(s):  
Health Care ◽  
Community Health ◽  
Community Health Workers ◽  
Health Care Providers ◽  
Health Workers ◽  
Hybrid Approach ◽  
Narrative Medicine ◽  
Structured Interview ◽  
Patient Perspectives ◽  
Care Providers

Abstract Background Narrative medicine (NM) encourages health care providers to draw on their personal experiences to establish therapeutic alliances with patients of prevention and care services. NM medicine practiced by nurses and physicians has been well documented, yet there is little understanding of how community health workers (CHWs) apply NM concepts in their day-to-day practices from patient perspectives. Objective To document how CHWs apply specific NM concepts in Brazil’s Family Health Strategy (FHS), the key component of Brazil’s Unified Health System. Design We used a semi-structured interview, grounded in Charon’s (2001) framework, including four types of NM relationships: provider–patient, provider–colleague, provider–society, and provider–self. A hybrid approach of thematic analysis was used to analyze data from 27 patients. Key Results Sample: 18 females; 13 White, 12 “Pardo” (mixed races), 12 Black. We found: (1) provider–patient relationship—CHWs offered health education through compassion, empathy, trustworthiness, patience, attentiveness, jargon-free communication, and altruism; (2) provider–colleague relationship—CHWs lacked credibility as perceived by physicians, impacting their effectiveness negatively; (3) provider–society relationship—CHWs mobilized patients civically and politically to advocate for and address emerging health care and prevention needs; (4) provider–self relationship—patients identified possible low self-esteem among CHWs and a need to engage in self-care practices to abate exhaustion from intense labor and lack of resources. Conclusion This study adds to patient perspectives on how CHWs apply NM concepts to build and sustain four types of relationships. Findings suggest the need to improve provider–colleague relationships by ongoing training to foster cooperation among FHS team members. More generous organizational supports (wellness initiatives and supervision) may facilitate the provider–self relationship. Public education on CHWs’ roles is needed to enhance the professional and societal credibility of their roles and responsibilities. Future research should investigate how CHWs’ personality traits may influence their ability to apply NM.

scholarly journals How We Heal: Genealogical Narratives of Healing among San Lázaro Devotees

Genealogy ◽  
2021 ◽  
Vol 5 (1) ◽  
pp. 18
Author(s):  
Elaine Penagos
Keyword(s):  
Narrative Inquiry ◽  
Family Members ◽  
Narrative Medicine ◽  
Everyday Practices ◽  
The Everyday ◽  
Cuban Americans ◽  
Photo Essay ◽  
Healing Narratives

Healing is the basis of belief in San Lázaro, a popular saint among Cubans, Cuban-Americans, and other Latinx peoples. Stories about healing, received through faith in San Lázaro, are typically passed on through family members, rendering them genealogical narratives of healing. In this photo essay, the author draws on her maternal grandmother’s devotion to San Lázaro and explores how other devotees of this saint create genealogical narratives of healing that are passed down from generation to generation. These genealogical narratives of healing function as testaments to the efficaciousness of San Lázaro’s healing abilities and act as familial avenues through which younger generations inherit belief in the saint. Using interview excerpts and ethnographic observations conducted at Rincón de San Lázaro church in Hialeah, Florida, the author locates registers of lo cotidiano, the everyday practices of the mundane required for daily functions and survival, and employs arts-based methods such as photography, narrative inquiry, and thematic poetic coding to show how the stories that believers tell about San Lázaro, and their experiences of healing through faith in the saint, constitute both genealogical narratives of healing and genealogical healing narratives where testimonies become a type of narrative medicine.

scholarly journals Managing transition to ValueēBased hospital care pathways

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
A Scardoni ◽  
S Sancini ◽  
A Ambrosio ◽  
C Signorelli ◽  
A Odone
Keyword(s):  
Clinical Pathways ◽  
Therapeutic Process ◽  
Sustainable Use ◽  
Narrative Medicine ◽  
University Hospitals ◽  
Main Challenge ◽  
It Support ◽  
Hospital Transition ◽  
Work Model ◽  
Patient Related Outcome

Abstract Issue San Raffaele Hospital (OSR) is part of a European alliance of 9 University Hospitals (EUHA) which promotes comparison and excellence in the clinical, research and training strategies. Description of the Problem The development of Value-Based (VB) strategies has been active in OSR since March 2019, with multidisciplinary healthcare pathways and with the promotion of patient engagement. Results The prostate cancer pathway was identified as a pilot and replicable model to promote the VB culture in different areas, in particular in the field of digitalization, human resources, research, redesigning of paths and outcomes collection. The other clinical pathways progressively launched during 2019 were: breast cancer, stroke, heart failure and pancreatic cancer. The project was realized by: • setting up a Multidisciplinary disease teams; developing a training course on VB, involving all the healthcare professionals (clinicians and managers);involving patient associations in the development of the pathway;adopting sets of clinical outcomes, Patient-Related Outcome Measures (PROMs) and Patient-Related Experience Measures (PREMs) with a specific collection platform, currently under implementation;identifying new IT support tools, activated from March to December 2019 in 11 Disease Units: HealthMeeting, a platform supporting document and data sharing, connecting different Specialists and performing advanced digital multidisciplinary meetings; DNM-Digital Narrative Medicine, a platform connecting patients with their clinical team, supporting web-based storytelling and personalized therapeutic approach. Lessons The introduction of a new shared and patient-centred work model, with the reorganization of spaces, resources and dedicated IT tools, has improved the diagnostic-therapeutic process. Key messages The main challenge of hospital transition to VB pathways is organizational and cultural. For VB implementation is needed sustainable use of available resources and IT, to achieve better outcomes.

scholarly journals Narrative medicine to improve the management and quality of life of patients with COPD: the first experience applying parallel chart in Italy

2018 ◽  
Vol Volume 13 ◽  
pp. 287-297 ◽  
Author(s):  
Paolo Banfi ◽  
Antonietta Cappuccio ◽  
Maura Latella ◽  
Luigi Reale ◽  
Elisa Muscianisi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Narrative Medicine

The narrative epidemiology of L'Aquila 2009 earthquake

2012 ◽  
Vol 21 (1) ◽  
pp. 13-21 ◽  
Author(s):  
M. Casacchia ◽  
R. Pollice ◽  
R. Roncone
Keyword(s):  
Natural Disasters ◽  
Stress Disorder ◽  
Acute Stress ◽  
Narrative Medicine ◽  
Point Of View ◽  
Traumatic Experience ◽  
Post Traumatic Stress ◽  
13Th Century ◽  
Surrounding Areas ◽  
Work Done

The authors describe their experience working and living in L'Aquila, where at 3.32 a.m., early in the morning of 6 April 2009, a 6.3 Richter magnitude earthquake caused serious damages to this 13th century town (with a population of 72 000 and a health district of 103 788), in the mountainous Abruzzo region and to several medieval hill villages in the surrounding areas: 309 residents were killed, over 1600 were injured, 66 000 residents were displaced, and, the centre of L'Aquila, the main historical and artistic centre of Abruzzo, was totally destroyed.Here is described the work done at the Psychiatric Unit of the General Hospital of L'Aquila and in the University. The Authors report the incidence rate of Acute Stress Disorder (ASD) in help-seekers (full ASD 4.9%, and partial ASD 39.3%), and of post-traumatic stress disorder (PTSD) found in different samples of population (range 12–37.5). The authors express their consideration about which real-world variables can reflect the population distress and the naturalistic process of recovery in such natural disasters. After the earthquake they hypothesize that a lot of residents had found their way to recover through ‘writing, telling the story’, by analogy with what narrative medicine asserts, thus estimating the positive effect of ‘emotional disclosure’ on health. A large number of materials (books, web-blogs, videos) were produced by residents and a database of memories was implemented. The suffering and struggle to recover in the aftermaths of a traumatic experience often yields remarkable transformations and positive growth. From this point of view, the authors underline the increased virtual relationships of residents through Facebook, to cope with the loss of previous social relationships, to get information about recreational opportunities, or to get organized for public events, despite their displacement. Many collective demonstrations were organized and showed the will to actively participate to the processes of reconstruction of the civil and scientific life of the town. The authors stress the need to prevent natural disasters, instead of preventing mental disorders following natural disasters, reporting that seven Italian seismologists and scientists are on trial for manslaughter, accused to have failed to evaluate the true risks of L'Aquila earthquake.

scholarly journals Living with Chronic Spontaneous Urticaria in Italy: A Narrative Medicine Project to Improve the Pathway of Patient Care

2017 ◽  
Vol 97 (1) ◽  
pp. 81-85 ◽  
Author(s):  
A Cappuccio ◽  
T Limonta ◽  
A Parodi ◽  
A Cristaudo ◽  
F Bugliaro ◽  
...  
Keyword(s):  
Patient Care ◽  
Narrative Medicine ◽  
Chronic Spontaneous Urticaria
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