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.

Narrative Medicine in Hospice and Palliative Care: A Longitudinal Fellowship Curriculum Pilot.

INTRODUCTION: Growing evidence suggests that clinician exposure to narrative medicine (NM) may help bolster resilience and mitigate burnout. The value of formal longitudinal training in NM for hospice and palliative medicine (HPM) trainees remains understudied. METHODS: A 1-year longitudinal NM curriculum for HPM fellows was pilot-tested for feasibility, acceptability, and exploratory impact. Six monthly 45-minute sessions included reading literature, reflective writing, and sharing creative work. Quantitative and qualitative data were collected through a pre-intervention survey and post-intervention survey administered immediately upon completion of the curriculum. Longitudinal impact was assessed with a post-intervention survey administered three months after completion of the curriculum. RESULTS: All HPM fellows (n = 6) attended at least 5/6 sessions during the 1-year pilot, suggesting intervention feasibility. Participant engagement and self-reported comfort with NM exercises supported intervention acceptability. Post-intervention, participants described the positive influence of NM practice on their clinical practice and stated an intention to integrate NM skills in their future HPM careers. Three months following the intervention, participants had a sustained increase in their comfort level with NM. All participants felt that the NM sessions had been relevant to their life as HPM fellows and anticipated using NM moving forward in their practice of HPM. DISCUSSION: This novel NM curriculum was feasible and acceptable to implement in a 1-year HPM fellowship. Longitudinal impact showed sustained increase in trainee comfort and interest in using NM in their future clinical practice.

Investigating coping and stigma in people living with HIV through narrative medicine in the Italian multicentre non-interventional study DIAMANTE.

Antiretroviral therapy (ART) significantly reduced Human Immunodeficiency Virus (HIV) morbidity and mortality; nevertheless, stigma still characterises the living with this condition. This study explored patients' coping experience by integrating narrative medicine (NM) in a non-interventional clinical trial. From June 2018 to September 2020 the study involved 18 centres across Italy; enrolled patients were both D/C/F/TAF naïve and previously ART-treated. Narratives were collected at enrolment (V1) and last visit (V4) and then independently analysed by three NM specialist researchers through content analysis. One-hundred and fourteen patients completed both V1 and V4 narratives. Supportive relationships with clinicians and undetectable viral load facilitated coping. Conversely, lack of disclosure of HIV-positive status, HIV metaphors, and unwillingness to narrate the life before the diagnosis indicated internalised stigma. This is the first non-interventional study to include narratives as patient reported outcomes (PROs). Improving HIV awareness and reducing the sense of guilt experienced by patients helps to overcome stigma and foster coping.

Analysis of Student Reflections on "What Matters Most" to Palliative Care Patients: A Narrative Medicine Exercise.

Background: Effective communication with ill patients requires practice, yet, the traditional history overlooks patients' personal stories. This information is vital to determining goals of care and facilitates partnership by building trust. Objective: We implemented a narrative medicine exercise for students during their palliative medicine rotation to highlight humanism. Impact was determined through thematic analysis of students' reflections. Design: Students elicited "what matters most" to patients, transcribing this plus a personal reflection. Using an inductive and iterative approach, 100 reflections were analyzed, developing codes then broader themes. Results: Four main themes (Getting to know the patient, Student Reaction, Building-blocks of patient-physician relationship, Student Personal Insights) were identified, with 15 subthemes. Conclusion: The power of uncovering patients' backgrounds and values was demonstrated, reinforcing a palliative medicine approach. Analysis showed a positive impact and the possibility of change to future practice. The intervention was feasible, well received, and encouraged reflection on the physician-patient relationship beyond the medical domain.

Recognizing and Maximizing the Nexus of Perioperative Medicine and Narrative Medicine.

Perioperative medicine remains an evolving, interdisciplinary subspecialty, which encompasses the unique perspectives and incorporates the respective vital expertise of numerous stakeholders. This integrated model of perioperative medicine and care has a wide-ranging set of clinical, strategic, and operational goals. Among these various programmatic goals, a subset of 4, specific, interdependent goals include (1) enhancing patient-centered care, (2) embracing shared decision-making, (3) optimizing health literacy, and (4) avoiding futile surgery. Achieving and sustaining this subset of 4 goals requires continued innovative approaches to perioperative care. The burgeoning field of narrative medicine represents 1 such innovative approach to perioperative care. Narrative medicine is considered the most prominent recent development in the medical humanities. Its central tenet is that attention to narrative-in the form of the patient's story, the clinician's story, or a story constructed together by the patient and clinician-is essential for optimal patient care. If we can view the health care experience through the patient's eyes, we will become more responsive to patients' needs and, thereby, better clinicians. There is a potential clinical nexus between the perioperative medicine practice and narrative medicine skills, which, if capitalized, can maximize perioperative patient care. There are a number of untapped educational and research opportunities in this fruitful nexus between perioperative medicine and narrative medicine.

Manual de Medicina Narrativa em Oncologia / Handbook of Narrative Medicine in Oncology

Este trabalho visou a criação do primeiro Manual de Medicina Narrativa em Oncologia, para preencher uma lacuna existente na formação médica e na educação continuada, afim de dar os primeiros ensinamentos, aos que pretendem se introduzir nesta disciplina; foram convidados experts inseridos na oncologia, na literatura e nas artes, que colocaram a sua experiência de forma técnica mas parazerosa nos capitulos. No momento não há no Brasil nenhum manual para a introdução de profissionais da Oncologia à Medicina Narrativa, apesar da Medicina Narrativa existir de fato desde 2001, e as evidências da Oncologia Narrativa desde 2003 nos Estados Unidos da América. No manual é apresentado ao leitor a Medicina Narrativa, sua relação com a Biblioterapia, com Comunicação Eficiente, com a Navegação Oncológica, com a Arte em Saúde, com a Experiência da Profissional Paciente, com a Educação no Paciente com Câncer, com os Cuidados Paliativos e com a Oncologia Pediátrica, de maneira técnica, mas ao mesmo tempo simples e prazerosa. No último capítulo há o convite para um minicurso, através de conteúdos selecionados, textos, livros, pinturas, filmes e vídeos para despertar o leitor para a as artes, uma imersão autorreflexiva, de autodesenvolvimento, e ao final é apresentado um anexo com uma que convida o leitor a uma autorrevisão dos capítulos, estimulando a escrita e a memória. Consideramos que a Oncologia Narrativa será uma área de grande crescimento, haja vista as evidências da contribuição desta para o ecossistema: paciente, familiares, comunidade, médicos, profissionais da saúde, prestadores, operadoras de saúde e Sistema Único de Saúde (SUS). O Manual pretende o substrato para esta transformação como uma ferramenta de auto desenvolvimento e de introdução a pratica autoreflexiva. Bem vindo a Oncolologia Narrativa.

This work aimed at creating a Manual of Narrative Medicine in Oncology, which seeks to fill an existing gap in medical training and continuing education,in order to give the first lessons to those who intend to introduce themselves to this technique and discipline; here we will share the experience of protagonist in the journey of a Cancer Center.At the moment there is no manual in this sense aimed at specifically introducing cancer center professionals in Brazil to Narrative Medicine despite its emergence in American oncology since 2003 through the American Society for Radiation Oncology (ASTRO) from interviews in the PRO Narrative Oncology section with poems and works of art, and the Journal of Clinical Oncology with the Art of Oncology section dedicated to personal essays, and also with the journal Practical Radiation Oncology which had a section on Narrative Oncology which in 2012 brought together oncology leaders and makes the special publication Narratives in Oncology, always remembering that the landmark of narrative medicine is Rita Charon's 2001 publication(The patient-physician relationship. Narrative medicine: A model for empathy, reflection, profession, and trust. JAMA, v.286, n. 15, p.1897-902, 2001).In Brazil, more precisely in the state of São Paulo, there is a course dedicated only to Narrative Medicine, with no precise relation to oncology, in the extension area at Escola Paulista de Medicina ­ Universidade Federal de São Paulo, and a discipline at the University of São Paulo , the first called Narrativas em Saúde ­ Multiprofessional and interdisciplinary Extension Project that works with Narrative Medicine, with a monthly meeting and some work projects with patients and the community, and Neuro-narrative and Neuro-discourse, linked to the Neuro-discourse Sector. Humanities of the Discipline of Neurology, which gives notions of neuroscience regarding cognition, allow associating narrative activity and its correlations with the improvement of the cognitive abilities of both the professional and the patient; the second at the University of São Paulo at the Faculty of Philosophy, Letters and Human Sciences, in the Literature, Narrative and Medicine Study and Research Group, which aims to analyze and interpret different types of narrative. We believe that Narrative Oncology will be an area of great growth, given the evidence of its contribution to the ecosystem: patient, family, community, physicians, health professionals, providers, health insurance companies and the Unified Health System (SUS).

Profesionalismo y medicina narrativa / Professionalism and narrative medicine

This work is a bibliographical review of the challenges of professionalism in medical training. Medicine practiced with narrative competence, called narrative medicine, is proposed as a model for humane and effective medical practice. By virtue of the changes in the practice of medicine during the last years, professionalism values emerge as qualities that should reshape medicine. Several medical associations are redefining professionalism and insist that this issue should be included in the training curriculum. Thus, several medical education institutions are pursuing strategies to teach and assess professionalism. Modeling is still relevant as a learning strategy, but it must be tutored and directed. Also, timely and formative feedback appears as the most frequently suggested evaluative action. Both processes incorporate a personal reflective practice. Several recent studies suggest that a reflective experience is relevant for the formation of a professional identity. Narrative Medicine methodology emerges as an innovative strategy to address this issue, as it seeks to deliver valuable learning experiences to the students through reflection and the search for a new paradigm for medical practice.

The Narrative Medicine Approach in the Treatment of Diabetic Macular Edema: An Italian Experience.

The study retraces the healthcare pathway of patients affected by diabetic macular edema (DME) through the direct voice of patients and caregivers by using a "patient journey" and narrative method approach. The mapping of the patient's journey was developed by a multidisciplinary board of health professionals and involved four Italian retina centers. DME patients on intravitreal injection therapy and caregivers were interviewed according to the narrative medicine approach. Narratives were analyzed through a quali-quantitative tool, as set by the narrative medicine method. The study involved four specialized retina centers in Italy and collected a total of 106 narratives, 82 from DME patients and 24 from caregivers. The narratives reported their difficulty in identifying the correct pathway of care because of a limited awareness of diabetes and its complications. Patients experienced reduced autonomy due to ocular complications. In the treatment of diabetes and its complications, a multidisciplinary approach currently appears to be missing. DME reduces the quality of life of affected patients. The narrative medicine approach offers qualitative and emotional patient-guided information. The patient journey provides all of those involved in the management of DME with flowcharts to refer to, identifying the critical points in the healthcare journey of DME patients to improve the management of the disease.

O que estudantes nos contam sobre as entrevistas narrativas / What students tell us about narrative interviews

Romper com o modelo biomédico é necessário, e o ponto inicial pode vir com a compreensão da narrativa do usuário ou da usuária. Este estudo buscou avaliar a compreensão de estudantes de medicina das narrativas de adoecimento, utilizando a entrevista McGillIllness Narrative Interview (MINI). Trata-se de estudo exploratório, descritivo e qualitativo, realizado durante cinco semanas com 11 estudantes do quinto ano de uma universidade privada, no internato de Medicina de Família e Comunidade, que prestavam atendimento a 29 pessoas usuárias de unidades de saúde. Por meio de encontros individuais on-line, foram levantadas questões sobre essa experiência. Os relatos foram inseridos em núcleos argumentais, o que possibilitou o estabelecimento de relações com o referencial teórico da Medicina Narrativa, da Antropologia Médica e da Clínica Ampliada. Para os alunos e alunas houve uma nova experiência de entrevista clínica, uma valorização da narrativa e o desejo de incorporar uma abordagem mais ampliada à sua prática, embora não contemplem incorporar o MINI na sua forma integral, atribuindo a isso dificuldades na rotina médica. Acreditamos que o MINI pode colaborar com a aquisição de competências interpretativa e narrativa em estudantes, embora o ensino esteja ainda, emparte, vinculado ao modelo biomédico.

It is essential to break with the biomedical model. The starting point for that can come from the understanding of patients' narratives. This study sought to evaluate medical students' comprehension of illness narratives using the McGill Illness Narrative Interview (MINI). This is an exploratory, descriptive, and qualitative study, carried out with 11 fifth-year students at a private university in the internship of Family and Community Medicine, for five weeks, involving the care of 29 patients in health units. Through individual online meetings, questions were raised about the experience.The reports were inserted into categories, which allowed us to establish relationships among the theoretical referential elements of Narrative Medicine, Medical Anthropology, and Expanded Clinic. It was a new experience of clinical interviews for the students, with a new appreciation of narratives and a desire to incorporate a more extended approach to their practice, although they do not contemplate incorporating the MINI in its full form due to difficulties in the physician's routine. We believe that MINI can collaborate with the acquisition of interpretative and narrative competence in students, although teaching is still partly linked to the biomedical model.

História não registradas em prontuários: sob o olhar dos usuários / History not recorded in medical records: under the eyes of users

Esta obra traz o relato de uma experiência desenvolvida entre os anos de 2020 e 2021, realizada a partir da discussão da Relação Médico(a)-Paciente-Usuário(a) na disciplina Propedêutica Médica do curso de Medicina do Centro Multidisciplinar UFRJ ­ Macaé, utilizando para isso uma Metodologia Ativa de Ensino-Aprendizagem (MAEA), construída a partir da perspectiva biopsicossocial de sujeito e de saúde. Através de narrativas que foram apresentadas em sessões tutoriais e das discussões que se desdobraram nessa disciplina, o(a)s discentes criaram ressonância com histórias reais sobre experiências positivas e negativas de atendimentos médicos, que o(a)s ajudaram a construir a ideia de médicos e médicas que ele(a)s gostariam de ser e, sobretudo, daquele(a)s que ele(a)s não gostariam de ser. Por fim, as narrativas escritas pelo(a)s estudantes deram origem a uma coletânea, organizada neste livro "Histórias não registradas em prontuários: sob o olhar dos usuários". Não é novidade que a formação médica no Brasil passa por um debate sobre a necessidade de ultrapassar sua raiz biomédica. Atualmente, diversas faculdades de medicina vêm propondo reformas em suas matrizes curriculares na tentativa de formar profissionais alinhados com uma perspectiva biopsicossocial de sujeito e de saúde, por isso a importância de discutir a relação médico(a)-paciente-usuário(a).

Narrative Medicine: Perioperative Opportunities and Applicable Health Services Research Methods.

Narrative medicine is a humanities-based discipline that posits that attention to the patient narrative and the collaborative formation of a narrative between the patient and provider is essential for the provision of health care. In this Special Article, we review the basic theoretical constructs of the narrative medicine discipline and apply them to the perioperative setting. We frame our discussion around the 4 primary goals of the current iteration of the perioperative surgical home: enhancing patient-centered care, embracing shared decision making, optimizing health literacy, and avoiding futile surgery. We then examine the importance of incorporating narrative medicine into medical education and residency training and evaluate the literature on such narrative medicine didactics. Finally, we discuss applying health services research, specifically qualitative and mixed methods, in the rigorous evaluation of the efficacy and impact of narrative medicine clinical programs and medical education curricula.

Narrative medicine: feasibility of a digital narrative diary application in oncology.

OBJECTIVES: We implemented narrative medicine in clinical practice using the Digital Narrative Medicine (DNM) platform. METHODS: We conducted a preliminary, open, uncontrolled, real-life study in the oncology and radiotherapy departments of Istituto di Ricovero e Cura a Carattere Scientifico National Cancer Institute Regina Elena, Rome, Italy. We recruited adult Italian-speaking patients who then completed the DNM diary from the start of treatment. The primary endpoint was DNM feasibility; secondary endpoints were health care professionals' opinions about communication, therapeutic alliance, and information collection and patients' opinions about therapeutic alliance, awareness, and coping ability. We used open- and closed-ended questions (scores 1 to 5) and a structured interview. RESULTS: Thirty-one patients (67%) used the diary (84% women). Health care professionals' mean scores for feasibility and utility were ≥4.0. Patients' utility scores were related to health care professionals' feedback regarding the narratives. The main advantages for health care professionals were the opportunity to obtain relevant patient data and to strengthen communication and patient relationships (mean scores 4.4-5.0). Both groups strongly encouraged introduction of the diary in clinical practice. CONCLUSION: Use of the DNM in oncology patients assisted clinicians with understanding their patients experience.

The Impact of an Unconventional Elective in Narrative Medicine and Pediatric Psycho-oncology on Humanism in Medical Students.

Over the course of medical school, students' optimism and hopefulness often devolve into a cynical view of medicine that continues throughout clinical rotations and beyond (Neumann et al., Acad Med 86(8):996-1009, 2011). Here, we present a qualitative evaluation of a novel immersive elective in pediatric psycho-oncology coupled with narrative medicine and its impact on students. Participants were third- and fourth-year medical students who were relieved of traditional clinical duties. Alternatively, they shadowed pediatric cancer patients, keeping narrative journals of their observations and insights. A trained team of pre-clinical medical students and faculty conducted a retrospective analysis of 120 journals written between 2008 and 2019. They compared recurring concepts to assess how blending experiential learning and reflective writing influenced the attitudes and behaviors of students. Consistent themes emerged related to developing a rich understanding of patient experiences, a humanistic appreciation of the context of illness, the ability to meaningfully reflect on insights to critically ill children, and an appreciation for the unique learning opportunity. Additionally, families expressed gratitude for the students' attentiveness to their emotional needs. By the conclusion of the elective, most students discovered that they had reignited their intrinsic empathic behaviors and were provided with beneficial insights that they believed would continue into future rotations. Experiential teaching methods paired with narrative reflection may be a valuable and therapeutic tool to learn the intricacies of the patient perspective, with the potential to enhance humanism in students during a critical time in their medical training when empathy tends to drift. Longitudinal and quantitative studies are warranted to better understand the degree and duration of specific benefits.

Real-life patient journey in neovascular age-related macular degeneration: a narrative medicine analysis in the Italian setting.

OBJECTIVES: To investigate the real-life experience of patients affected by neovascular age-related macular degeneration (nAMD), in the healthcare pathway for the management of the disease, using a "patient journey" and narrative method approach. METHODS: The patient journey of subjects affected by nAMD was designed using a process-mapping methodology involving a team from 11 Italian centres. Subsequently, narratives were collected from nAMD patients and family members. The interviews were analyzed using the narrative medicine methodology. RESULTS: Eleven specialized retina centres across Italy were involved and 205 narratives collected. In 29% of cases, patients underestimated their symptoms or attributed them to non-pathological causes, thus delaying the specialist consultation. The delay in accessing to care was due to a lack of awareness of this disease (50% of the participants didn't know what nAMD is) and to critical issues faced at first visit (long waiting lists, failed diagnosis, underestimation of the problem). Despite anti-VEGF therapies were perceived as effective in improving or stabilizing vision in 91% of narratives collected, 77% of patients still reduced or ceased daily activities such as reading and driving. Within the pathway of care there was not a multidisciplinary approach, and the patients were treated just by the ophthalmologist. CONCLUSIONS: nAMD may significantly affect the quality of life of affected patients, both from a functional and psychological point of view. The narrative medicine approach highlights some critical points in the healthcare journey of nAMD patients and represents a useful background in implementing patient management algorithms and pathways of care.

Memórias, trajetórias e experiência no campo do cuidado às pessoas vivendo com HIV/AIDS: uma autoetnografia / Memories, trajectories and experience in the field of care for people living with HIV/AIDS: an autoethnography

Essa dissertação comparece entrelaçando produção de conhecimento no campo da atenção e pesquisa dirigida às crianças, adolescentes, jovens e gestantes vivendo com Hiv/aids, e minhas memórias e experiência no campo do cuidado. Para tanto assume a perspectiva metodológica autoetnográfica sustentada pela discussão da Antropologia das Emoções. Isso porque compreendemos que a mobilização das memórias, experiência e trajetória da autora não passa impune pela sensibilização necessária de si própria. E esse processo de sensibilizar invade o texto, que utiliza como dispositivo para mobilizar os leitores, sensibilizando-os, a produção autoral de crônicas, contos e poesias. Partindo desse dispositivo, pretendemos também embaçar possíveis personagens reais, e alcançar figuras que reúnem traços comuns a muitos e muitas que fazem parte das práticas de pesquisa e atenção no campo do Hiv/aids. Alertamos que a dimensão autoetnográfica se revela processo de narrativização da convivência com aqueles e aquelas que durante 20 anos foram atendidos e participantes de pesquisas mediadas pela autora. Organizamos o acervo de crônicas / contos /poesias abrindo cada um dos três núcleos que organizam a produção de conhecimento nessa trajetória: 1) Estigma e Suas Reatualizações; (2) Quando o Segredo Cola com a Doença: Segredo ­ Sigilo ­ Revelação; (3) O Caleidoscópio do Cuidado e a Entrada do Psicólogo no Hospital Geral. Concluímos que para quem ainda está na linha de cuidados de pessoas que vivem com Hiv/aids, essa dissertação é um convite afetivo de refletir sobre esses conceitos encarnados. E ter a oportunidade de pensar criticamente a construção de práticas que cuidam e que incluem, mas também, e principalmente, pensar para transformar as práticas que reproduzem, atualizam e perpetuam práticas violentas de des-cuidado, de opressão e exclusão, e como isso opera como um Sistema naturalizado que se repete como uma estrutura de medicalização da vida e redução da mesma a elementos de controle racional.

This dissertation has come forward intertwining the building up of knowledge from clinical trials with children, adolescents, youngsters, and pregnant women living with Hiv/aids and memories, experiences I have lived as caregiver. It embodies the methodological autoethnographic perspective upheld by the debate of Anthropology of Emotions because we understand that mustering the author's remembrances, assignments and trajectory does not waive the necessary awareness of oneself. And this process pervades the text that utilizes the authorial production of chronicles, short-stories, and poetry to reach out and touch the readers. With ingenuity, we envisage to shadow possible actual characters and engage archetypes with common features to many who are part of HIV/aids researches and attention. We remark that the autoethnographic dimension translates into a narrative about living with those who for 20 years are cared, and study participants mediated by the author. Chronicles, short-stories, poetries were gathered to reflect each one of the three hubs which deploy the production of knowledge in this trajectory: 1) Stigma and its novel updates; 2) When the secret sticks to the disease: Secret ­ Secrecy ­ Disclosure. 3) Kaleidoscope of care and the psychologist arrival at the general hospital. The conclusion we have reached for those who are still caring for persons who live with HIV/aids is that this dissertation is a gentle invitation to reflect about these concepts actually experienced. And embrace the opportunity to review critically the elaboration of caring and inclusive practices but mainly to think in transforming those which replicate, refresh, and perpetuate violent and uncaring conducts of oppression and exclusion and how a naturalized system functions, repeating itself as a medicalization and demeaning life structure to mere rational control.