A quantitative and qualitative analysis of patient group narratives suggests common biopsychosocial red flags of undiagnosed rare disease.

BACKGROUND: The 'diagnostic odyssey' is a common challenge faced by patients living with rare diseases and poses a significant burden for patients, their families and carers, and the healthcare system. The diagnosis of rare diseases in clinical settings is challenging, with patients typically experiencing a multitude of unnecessary tests and procedures. To improve diagnosis of rare disease, clinicians require evidence-based guidance on when their patient may be presenting with a rare disease. This study aims to identify common experiences amongst patients with rare diseases, to inform a series of 'red flags' that can aid diagnosis of rare diseases in non-specialist settings. A questionnaire was developed by Medics for Rare Diseases, informed by the experiences of clinicians, rare disease patients and patient advocates, and was shared with UK-based rare disease patient groups. Study participants were engaged via social media platforms, blogs and email newsletters of three umbrella rare disease organisations. The questionnaire, comprising 22 questions, was designed to identify typical experiences relating to physical and psychosocial manifestations and presentation of disease, patient interactions with healthcare providers, and family history. RESULTS: Questionnaire responses were received from 79 different rare disease patient groups and the common experiences identified were used to inform seven red flags of rare disease: multi-system involvement (3 or more); genetic inheritance pattern; continued presentation throughout childhood and adulthood; difficulties at school, especially relating to absences, difficulty participating in physical education and experiences of bullying or social isolation; multiple specialist referrals; extended period with unexplained symptoms; and misdiagnosis. In light of the red flags identified, recommendations for primary care and education settings have been proposed, focusing on the need for holistic assessment and awareness of both physical and psychosocial factors. CONCLUSIONS: This study identified key commonalities experienced by patients with rare disease across physical and psychosocial domains, in addition to understanding patients' history and experiences with healthcare providers. These findings could be used to develop a clinical decision­making tool to support non-specialist practitioners to consider when their patient may have an undiagnosed rare condition, which may minimise the challenges of the 'diagnostic odyssey' and improve the patient experience.

When Play Reveals the Ache: Introducing Co-constructive Patient Simulation for Narrative Practitioners in Medical Education.

Despite the ubiquity of healthcare simulation and the humanities in medical education, the two domains of learning remain unintegrated. The stories suffused within healthcare simulation have thus remained unshaped by the developments of narrative medicine and the health humanities. Healthcare simulation, in turn, has yet to utilize concepts like co-construction and narrative competence to enrich learners' understanding of patient experience alongside their clinical competencies. To create a conceptual bridge between these two fields (including narrative-based inquiry more broadly), we redescribe narrative competence via Ronald Heifetz's distinction of "technical" and "adaptive" challenges outlined in his adaptive leadership model. Heifetz, we argue, enriches learners' self-understanding of the unique demands of cultivating narrative competence, which can be both elucidated on the page and tested within the charged yet supportive simulation environment. We introduce Co-constructive Patient Simulation (CCPS) to demonstrate how working with simulated patients can support narrative work by drawing on the clinical vicissitudes of learners in the formulation and enactment of case studies. The three movements of CCPS-resensing, retelling, and retooling-told through learner experiences, describe the affinities and divergences between narrative medicine's sequence of attention, representation, and affiliation; Montello's three forms of narrative competence (departure, performance, change), and Heifetz's three steps (observe, interpret, and intervene) of adaptive leadership.

Investigation of clinical medicine undergraduates' recognition of narrative medicine.

BACKGROUND: Narrative Medicine (NM), a contemporary medical concept proposed in the 21st century, emphasizes the use of narrative as a literary form in medicine. This study aims to explore the understanding about NM and willingness to learn NM among medical students in our hospital. METHODS: A questionnaire survey was conducted among 130 students at Xiangya Medical College of Central South University. RESULTS: The findings revealed that a small percentage of students (3.1%) were familiar with narrative medicine and its training methods. Knowledge about the treatment skills (77.7%) and core content (55.4%) of narrative medicine was limited among the students. Despite this, a majority (63.1%) expressed a lack of interest in further understanding and learning about narrative medicine. Surprisingly, the survey indicated that students possessed a high level of narrative literacy, even without formal training in narrative medicine. Additionally, over half of the surveyed students (61.5%) believed that narrative medicine could benefit their clinical practice. CONCLUSIONS: This study serves as a preliminary basis for the future development of narrative medicine education in China. It highlights the need to prioritize medical humanities education and provide medical students with more opportunities to access information on narrative medicine. By doing so, we can strive to enhance the visibility and promote the integration of narrative medicine into medical humanities education in China.

Applying narrative medicine to prepare empathetic healthcare providers in undergraduate pharmacy education in Singapore: a mixed methods study.

BACKGROUND: Narrative medicine demonstrated positive impact on empathy in medicine and nursing students. However, this pedagogical approach had not been evaluated in pharmacy education. This study sought to apply and evaluate the narrative medicine approach in extending empathy in Asian undergraduate pharmacy students. METHODS: Narrative medicine was applied through workshops which used narratives of people with different experiences and perspectives. First-year undergraduate pharmacy students who volunteered and attended these workshops formed the intervention group (N = 31) and the remaining first-year cohort formed the control group (N = 112). A sequential explanatory mixed methods approach was adopted in which quantitative methods were first used to measure impact on pharmacy students' empathy using the Jefferson Scale of Empathy- Health Professions Student (JSE-HPS), and qualitative methods (i.e. group interviews) were then used to assess pharmacy students' emotional responses to narratives, and the perspectives of pharmacy students and faculty of this pedagogical approach. RESULTS: There was no difference in JSE-HPS scores between intervention and control groups across baseline (i.e. upon matriculation), pre-intervention, and post-intervention timepoints. Pharmacy students in the intervention group had lower scores in Factor 3 ("Standing in People's Shoes") following the intervention. Five themes, guided by internal and external factors in cognition, emerged from the Group Interviews: (1) incongruence between students' motivation and faculty's perception, (2) learning context, (3) academic context, (4) cognitive system, and (5) affective system. Themes 1, 4 and 5 referred to internal factors such as students' motivation, perceived learnings, and feelings. Themes 2 and 3 referred to external factors including workshop materials, activities, content, and facilitation. CONCLUSION: This study is the first to demonstrate that pharmacy students engaged with the narrative medicine approach as narratives elicited emotional responses, exposed them to diverse perspectives, and deepened their appreciation of the importance of empathy and complexities of understanding patients' perspectives. Scaffolded educational interventions using narratives and real-life patient encounters, alongside longitudinal measurements of empathy, are necessary to bring about meaningful and sustained improvements in empathy.

Medical students' perceptions of integrating social media into a narrative medicine programme for 5th-year clerkship in Taiwan: a descriptive qualitative study.

BACKGROUND: The growing demands in integrating digital pedagogies in learning (e.g., social media) contribute to disrupting many fields, including the medical humanities education. However, the strengths and barriers behind social media and medical humanities context are blurred and contradictive. We examined the perceptions of integrating social media - Facebook - into a narrative medicine (NM) programme for 5th -year clerkship in Taiwan. METHODS: We used purposive sampling to recruit participants. Sixteen medical students (Female/Male: 7/9) participated in four group interviews. Semi-structured focus group interviews were conducted to explore students' perceptions and experiences of the social media integrated into the NM programme. We analysed the data using a descriptive thematic analysis with a team-based approach. Data were managed and coded using ATLAS.ti version 9.0. RESULTS: We identified six main themes: (1) Positive experiences of social media integration; (2) Negative experiences of social media integration; (3) Barriers on writing and sharing NM stories in social media; (4) Barriers on reading NM stories in social media; (5) Barriers on reacting contents in social media; (6) Suggestions for future improvement. CONCLUSIONS: The study revealed the strengths and barriers from medical students' perceptions, when integrating social media into a NM programme. It is important to match students' experiences, barriers, and perceptions towards learning. Understanding participants' suggestions for future improvement are also crucial. With this knowledge, we might better develop the social media integration systems that achieve our desired outcomes based on the medical humanities education curricula.

Implementation and Evaluation of a Pilot Narrative Medicine Curriculum for Internal Medicine Residents.

Background Narrative medicine has been integrated into medical training to enhance competencies such as observation, reflection, and self-care. However, few studies have assessed the impact of a single narrative medicine session using a pre- and post-test study design. The authors of this study sought to implement a pilot narrative medicine curriculum into a large internal medicine residency program and to evaluate its feasibility and impact. Methodology The curriculum consisted of a one-hour reading and writing workshop held during ambulatory academic half-days from 2021 to 2022. Resident participants completed a retrospective pre- and post-workshop survey evaluating their interest and confidence in practicing narrative medicine skills, as well as their beliefs about the impacts of narrative medicine on patient care and provider well-being. Descriptive statistics evaluated pre- and post-workshop differences using the Wilcoxon signed-rank test. Subgroup analyses were conducted based on postgraduate year, residency track, and workshop setting. Additionally, participants completed open-ended questions that were analyzed qualitatively. Results Of 218 resident participants, 152 (69.7%) completed the post-session survey. Participants noted significantly higher levels of confidence and interest in listening to patient stories, analyzing literary texts, and engaging in reflective writing after the workshop. They also expressed significantly higher levels of agreement that engaging in literary analysis and reflective writing could improve patient care, reduce provider burnout, and strengthen connectedness with colleagues. Qualitative analysis demonstrated that participants found the sessions to be worthwhile and appreciated how narrative medicine could enhance their medical practice. Conclusions Incorporating a brief narrative medicine curriculum into an internal medicine residency program is both feasible and valuable. A single narrative medicine session was practical and well-received by residents, as it promoted self-reflection, observational skills, and connection with colleagues. Future workshops should be customized for different training levels and residency tracks, and additional studies should evaluate whether the outcomes persist over time.

Narrative medicine interventions for oncology clinicians: a systematic review.

PURPOSE: As narrative medicine interventions are integrated increasingly into medical practice, growing evidence indicates benefits for healthcare professionals. Presently, the prevalence and impact of narrative medicine interventions in the field of oncology remain unknown. This systematic review synthesizes published data on narrative medicine interventions in oncology and reports current knowledge on feasibility, acceptability, and impact on cancer care professionals. METHODS: Following PRISMA guidelines, we searched Ovid Medline, Embase, Scopus, Web of Science, Cochrane, and ClinicalTrials.gov databases from inception through February 2024. Eligible articles were published in English and contained original data on feasibility, acceptability, and/or impact of a narrative medicine intervention for oncology professionals. Database searches identified 2614 deduplicated articles, from which 50 articles were identified for full-text assessment and 11 articles met inclusion criteria. Two additional articles were identified through manual review of references. RESULTS: Thirteen articles described 12 unique narrative medicine interventions targeting cancer care professionals. All studies described their respective interventions as feasible, acceptable, and impactful for participants. Interventions involved writing, reading, reflection, and other narrative-based strategies. Standardized validated tools evaluated outcomes including burnout, empathy expression, secondary trauma, quality of humanistic care, and well-being. Participants reported appreciation of opportunities for reflection, perspective sharing, and bearing witness, which they perceived to strengthen wellness and community. CONCLUSION: Narrative medicine interventions are feasible and acceptable and may bolster oncology clinicians' functioning across domains. Multi-site, prospective, randomized studies are needed to investigate the broader impact of narrative medicine interventions and advance the science of narrative medicine in oncology. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: CRD42022369432.

Developing "The Health After Cancer Podcast" to amplify cancer survivors' voices through digital storytelling.

BACKGROUND: Cancer survivors experience complex medical and psychosocial challenges after a cancer diagnosis, leading to unmet informational and emotional needs. There is a paucity of cancer survivorship educational resources co-created by survivors and medical professionals. OBJECTIVE: Our aim was to create an educational resource for cancer survivors, caregivers, and medical professionals that would leverage digital storytelling to address survivorship topics. PATIENT INVOLVEMENT: Our content and production team included cancer survivors, clinicians, educators, and design experts. All content was co-created by cancer survivors and medical experts. METHODS: We conducted an environmental scan of existing cancer survivorship educational resources in academic and public domains. Applying human-centered design principles, we incorporated patient perspectives through advisory board meetings and focus groups and identified a podcast as the preferred medium. We selected content and speakers, produced the podcast, and developed a corresponding website. RESULTS: Based on patient recommendations, podcast episodes address mental health, fear of cancer recurrence, relationships, parenting, relating to a new body, care transitions for adult survivors of childhood cancer, disclosing health information, and financial burden of cancer. Podcast guests were invited based on lived or learned experience in these domains. Thirteen guests (survivors, experts) and four hosts (two cancer survivors, two oncologists) co-created 15 podcast episodes. Podcast guests found the storytelling experience to be powerful and therapeutic. DISCUSSION: Digital storytelling is a scalable and accessible educational tool for communicating complex survivorship concepts that can amplify survivors' voices and increase awareness among survivors and clinicians. Co-creation of educational resources for cancer survivorship by survivors and professionals is a feasible and innovative educational strategy. PRACTICAL VALUE: A podcast created by and for cancer survivors in partnership with medical experts highlights opportunities for peer-to-peer digital storytelling to foster community among survivors and caregivers. FUNDING: Podcast production was supported by the Stanford Comprehensive Cancer Center.

Combating ageism in medical education with narrative medicine.

Ageism is common in medical trainees and difficult to overcome. The My Life, My Story program has been shown to be an effective tool for increasing empathy. We explored its use as an instrument for combating ageism by implementing it in a Geriatrics clerkship for fourth year medical students. During our evaluation, 151 students interviewed patients about their lives using a semi-structured question guide. Students completed the UCLA Geriatrics Attitudes Scale and the Expectations Regarding Aging Survey pre-and post-clerkship. We also facilitated 9 student debriefs and 5 faculty interviews. After completing My Life, My Story, students were more likely to disagree with "I would rather see younger patients than elderly ones" and "it's normal to be depressed when you are old". In qualitative analysis of the debriefs, we identified a key summative theme: "impact of the intervention on care teams". Within that, we describe three subthemes: an awareness of richness of the lives led by older people, their current value to society, and the social determinants of health they have faced. After participating in My Life, My Story, students' attitudes toward aging changed. A narrative medicine program using life stories can be a practical tool for addressing ageist stereotypes.

I'm still me, I'm still a person: war metaphor use and meaning making in women with metastatic breast cancer.

PURPOSE: The war metaphor is one strategy used frequently in breast cancer to inspire individuals in a "fight" against cancer and assist patients in navigating their illness experience. Despite prominent use, the emotional impact of this language has not been examined in the context of meaning making among women with metastatic breast cancer (MBC). METHODS: This study involved a semi-structured interview considering the war metaphor's impact on women's illness experience with MBC. Participants (n = 22) had been diagnosed with MBC for at least 6 months or following 1 disease progression and were undergoing treatment at an NCI-designated cancer center in Western Pennsylvania at the time of interview. Each participant underwent an individual interview exploring the war metaphor's impact on illness experience. Qualitative thematic analysis was performed to assess feelings about the war metaphor and emotional response to the lived experience of cancer. RESULTS: Two themes were identified surrounding metaphor use and participants' experiences with meaning making in cancer. First, women with MBC perceive the diagnosis as an "unfair fight" due to its incurable nature. Second, patients use alternative language of "living life" and communicate resistance to being defined by their cancer diagnosis. CONCLUSION: War metaphors are one collection of terminology people use to understand their diagnosis. However, their use may apply pressure to prioritize positivity in the face of diagnosis and treatment, in a unique clinical context where this may not be adaptive. These findings affirm a need to consider patients' lived experiences to best facilitate psychological adjustment to illness.

Narrative Medicine: The Power of Shared Stories to Enhance Inclusive Clinical Care, Clinician Well-Being, and Medical Education.

The COVID-19 pandemic exacerbated the problem of secondary trauma and moral injury for health care workers. This reality, together with the epidemic of social isolation and loneliness, has brought the mental health of health care practitioners and patients to the forefront of the national conversation. Narrative medicine is an accessible, diversity-honoring, low-cost, underutilized pedagogical framework with potentially revolutionary benefits for enhancing patient care, supporting the underserved, mitigating clinician burnout, and improving team dynamics. Herein, the authors review the literature on these benefits and then discuss methods for integrating narrative medicine into clinical care and medical education at the undergraduate and graduate levels as well as continuing medical education.

Examining a Novel Legacy Activity for Elders: Oral Histories as Produced Stories.

Background: Many African American elders who participated in The Great Migration are in the latter years of their lives. One way to maintain their memories and those of elders at large is through legacy activities, projects that initiate a life review process resulting in a product surviving after an individual's death. However, literature on culturally attuned legacy activities as well as measurement of impact are limited. Objectives: This project sought to introduce a novel legacy activity for elders-the oral history as produced aural self-story-detailing its creation and examining its therapeutic efficacy. Design Setting and Subjects: Nine African American elders who experienced The Great Migration receiving care from an urban, geriatric clinic were recruited. Oral histories were conducted, produced into aural self-stories, and examined with follow-up interviews and a project evaluation survey. Qualitative analysis of the follow-up interview and a project evaluation survey were used to ascertain therapeutic outcomes. Results: : All participants recommended the project and found self-story listening meaningful or beneficial. Qualitative interviews produced 13 codes; the five most frequent were reflection/contemplation (n = 18), sentimentality/positive affect and affirmation/enlightenment (n = 10), as well as empathy/gratitude and curiosity/intrigue/peculiarity (n = 7). Conclusion: : Our project suggests that aural self-stories produced from oral histories enhance the current elder legacy activity landscape by facilitating meaning and existential affirmation, additionally leaving a product for subsequent generations. Future studies include comparison to existing legacy interventions and project examination in additional elder populations.

Narrative Medicine Theory and Practice: the Double Helix Model.

The genesis of the medical humanities as a discrete academic discipline engendered a need for a theoretical framework, a function taken on by the growing narrative medicine movement. More recently, scholars have begun to develop a critical medical humanities, an analytical movement that emphasises the fundamental enmeshment of the sciences and humanities. Building on Helene Scott-Fordsmand's work on reversing the medical humanities, this paper develops an alternative to the current version of narrative medicine. We propose a new interpretive heuristic, the Double Helix Model, and place it in critical dialogue with the Columbia School's close reading based-approach. Through this new conceptual frame, we suggest that critical narrative medicine may empower clinicians to contribute to the reorientation of the roles of the sciences and humanities, benefiting providers, scholars and patients.

Narratives of childhood sexual abuse: healing through music in Ian McEwan's On Chesil Beach.

Narratives of survivors or by survivors offer useful and compelling insights into the experiences of abuse and its consequent effect on health. Reading such narratives can help a physician or clinician to understand the complexities of abuse. Furthermore, the critical study of narratives can open multiple therapeutic options for survivors of abuse to cater both their mental health and medical problems. In this article, we deal with the genre of childhood sexual abuse survivor's narrative and its clinical application adding to the discourse of medical humanities and then critically examine one such narrative (On Chesil Beach by Ian McEwan) in particular and explore the therapeutics of music in abused victim's clinical care.

Breathe.

This is a personal essay about breasts. It focuses on my experiences as a young girl, moving through adolescence to a history of breast cancer in my family, including my mother's breast cancer diagnosis. As a physician, patient, and wife, I reflect on the choices that I have to make and what this means for my identity as a woman and mother.

On dying alone in prison and the social responsibility of medicine: a pilot interview study of physicians caring for terminally ill incarcerated patients in Austria and the United States.

BACKGROUND: This group of physicians is difficult to reach and small in number. While studies of palliative care and end-of-life (EOL) issues in prison have increased, especially in the United States and since the coronavirus disease 2019 (COVID-19) pandemic, they are still limited due to the constraints of carrying out research in carceral contexts. At present, there is very little knowledge of the experiences of physicians providing EOL care in prisons. The aim of this pilot study was to examine the experiences of doctors caring for terminally ill patients inside prisons. METHODS: Three expert qualitative interviews were conducted in March and April 2021 with physicians working in carceral institutions in New York State and Austria. The interviews were audio-recorded and transcribed verbatim. Braun and Clarke's thematic analysis was used to examine the data. RESULTS: The following five themes were found: (I) a lack of training and support; (II) interrupted relationships; (III) limitations on visits and saying one's goodbyes; (IV) security as a main concern; and (V) the possibility of release. CONCLUSIONS: The study reveals the difficulties physicians face when caring for dying incarcerated patients. Provider-patient relationships are hardly continuous. The findings represent a starting point for further research. Support from the medical and palliative care community is needed for adequate provision of EOL care within prisons, improved post-release conditions, and help for physicians working in existing structures.