Background: Electroconvulsive therapy is one of the most effective treatments for major depressive disorder. Recently, there has been increasing attention to evaluate the effect of ECT on resting-state functional magnetic resonance imaging. This study aims to compare rs-fMRI of depressive disorder patients with healthy participants, investigate whether pre-ECT dynamic functional network connectivity network estimated from patients rs-fMRI is associated with an eventual ECT outcome, and explore the effect of ECT on brain network states.Method: Resting-state functional magnetic resonance imaging data were (...) collected from 119 patients with depression or depressive disorder, and 61 healthy participants, with an age mean of 52.25 years old. The pre-ECT and post-ECT Hamilton Depression Rating Scale were 25.59 ± 6.14 and 11.48 ± 9.07, respectively. Twenty-four independent components from default mode and cognitive control network were extracted, using group-independent component analysis from pre-ECT and post-ECT rs-fMRI. Then, the sliding window approach was used to estimate the pre-and post-ECT dFNC of each subject. Next, k-means clustering was separately applied to pre-ECT dFNC and post-ECT dFNC to assess three distinct states from each participant. We calculated the amount of time each subject spends in each state, which is called “occupancy rate” or OCR. Next, we compared OCR values between HC and DEP participants. We also calculated the partial correlation between pre-ECT OCRs and HDRS change while controlling for age, gender, and site. Finally, we evaluated the effectiveness of ECT by comparing pre- and post-ECT OCR of DEP and HC participants.Results: The main findings include depressive disorder patients had significantly lower OCR values than the HC group in state 2, where connectivity between cognitive control network and default mode network was relatively higher than other states, Pre-ECT OCR of state, with more negative connectivity between CCN and DMN components, is linked with the HDRS changes. This means that those DEP patients who spent less time in this state showed more HDRS change, and The post-ECT OCR analysis suggested that ECT increased the amount of time DEP patients spent in state 2.Conclusion: Our finding suggests that dynamic functional network connectivity features, estimated from CCN and DMN, show promise as a predictive biomarker of the ECT outcome of DEP patients. Also, this study identifies a possible underlying mechanism associated with the ECT effect on DEP patients. (shrink)

Although there is a growing acknowledgement of the potential of a more nuanced healthcare paradigm and practice, the discourses of health promotion—and with that nursing and other healthcare professionals’ practice—still tend to focus on the medical diagnosis, disease and the rationale of biomedicine. There is a need for shifting to a human practice that draws on a broader perspective related to illness. This requires a transformation of practices which can be constructed within a narrative understanding. A narrative approach appreciates the (...) importance of emotion and intersubjective relation in the telling and listening that occur in the clinical encounter. The essence of nursing lies in the creative imagination, the sensitive spirit and the intelligent understanding of the individuals’ possibilities of becoming empowered in his or her own life. This entails that the focus of the use of patients’ narratives is, ultimately, not the story itself, but the nurses’ and other healthcare professionals’ ability to support the patients in finding useful meaning in their stories. Herein, it is of particular importance to let the patients narrate about what is sparkling moments or events in the lived life. Stories with such focus can open up for patients’ hopes and dreams, which gives inspiration for finding meaningful ways to cope in life empowering personal recovery. It is, therefore, crucial to transform clinical settings into places that acknowledge the need for imagination and creativity, aiming at creating the opportunity for sensibility and vision essential to encouraging a narrative approach and thereby the ability to reflect upon and promote a healing process. (shrink)

This paper is a review of the experiences gained whilst working with the ‘expertise in practice project’. The project was concerned with understanding the complex phenomenon of practitioners investigating and evaluating their own practice. The research intention was focused on making a difference to how those nurses practised, through introducing systematic practice‐based inquiry processes that could enable nurses to think more critically about their work and how their practice affects others. Particular attention is paid to the process of engaging people (...) who use healthcare services, as research participants in the evaluation of nursing practice expertise. We outline how the project incorporated practitioners’ concerns about asking people who use health care services opinions on nursing practice expertise and how a process of discovery emerged that enabled transformation of practice and consideration of the patient‐participants’ role as a sophisticated evaluator of health‐care. As a result, we present a case for transformational qualitative research. Such research is values‐driven and uses inclusive, collaborative and facilitative processes. It contributes to human flourishing, not only through its ‘ends’ (i.e. research products) but also, intentionally, through its ‘means’ (e.g. research processes and stakeholder involvement). Thus, transformational research is complex and requires that researchers engage in reflexivity (deep self‐reflection) to examine and critique their personal values. (shrink)

Paperwork plays a key role in a how institutions accommodate, refuse, or manage disabled people. This article develops modes for reading paperwork that build on each other, beginning with (a) recognizing the institutional pressures at work in shaping bureaucratic practices, then (b) considering how a person's relationship to disability influences how they might encounter these practices, and ultimately (c) noticing how the encounter between disabled/mad people and an institution might create something new, what the author calls archival excess. These methods (...) for reading are in conversation with disability studies, medical humanities, and document studies, and ultimately work toward a goal adapted from the principles of Disability Justice: recognizing the wholeness of disabled subjects in institutional archives. (shrink)

Over the last few decades there has been a revival of interest in virtue ethics, with the emphasis on the virtuous caregiver. This paper deals with the ‘virtuous patient’, specifically the patient with End Stage Renal Disease (ESRD). We believe that a virtue approach provides insights not available to current methods of studying coping styles and coping strategies. Data are derived from seven semi-structured in-depth interviews. The transcripts of the interviews were subjected to an Interpretative Phenomenological Analysis (IPA). (...) The focus of the analysis was on ‘living well with chronic illness’. It appears that the moral challenges faced by patients with an ESRD are manifold. When they are invited to tell the story of their illness, they do not explicitly speak of virtues, but they often refer to moral qualities, and to attitudes that can be regarded as virtuous. We identify several such concepts in the narratives of patients with ESRD. We conclude that the Aristotelian model of virtue ethics is particularly descriptively (and possibly also normatively) relevant to the explanation of the life narratives and the moral challenges of patients with an ESRD. (shrink)

This review essay examines the emergence of the patient narrative or “pathography” in the late eighteenth and early nineteenth century in relation to the great cultural, epistemological, and ethical transformations that enabled the formation of modern medicine. John Wiltshire’s book provides an historical overview of this complex process, as well as laying the basis for a contemporary critique of some of its key assumptions.

This creative-critical piece reflects on the practices of recording, communicating, and caring that took place on social media and in digital spaces during the COVID-19 pandemic. Using my own experience of contracting COVID-19 as a starting point, the piece looks at the ways in which epidemics have often been recorded in collaborative ways, with the personal, professional, and familial converging in historical texts that could be used as sources of medical authority. COVID-19 has similarly been immortalized across a variety of (...) forms and by different communities. The piece particularly explores the ways in which collective epidemic experience has been represented online through autopathographical Tweets, TikTok cures, and group chat messages and the future purposes that such collaborative patient narratives can serve. (shrink)

Frances Burney is primarily known as a novelist and playwright, but in recent years there has been an increased interest in the medical writings found within her private letters and journals. John Wiltshire advocates Burney as the unconscious pioneer of the modern genre of pathography, or the illness narrative. Through her dramatic accounts of distinct medical events, such as her own infamous operation without anaesthetic, to those she witnessed, including the 'madness' of George III and the inoculation of her son (...) against smallpox, Burney exposes the ethical issues and conflicts between patients and doctors. Her accounts are linked to a range of modern narratives in which similar events occur in the changed conditions of the public hospital. The genre that Burney initiated continues to make an important contribution to our understanding of medical practice in the modern world. (shrink)

One goal of this paper is to argue that autobiographical memories are extended and distributed across embodied brains and environmental resources. This is important because such distributed memories play a constitutive role in our narrative identity. So, some of the building blocks of our narrative identity are not brain-bound but extended and distributed. Recognising the distributed nature of memory and narrative identity, invites us to find treatments and strategies focusing on the environment in which dementia patients are situated. A second (...) goal of this paper is to suggest various of such strategies, including lifelogging technologies such as SenseCams, life story books, multimedia biographies, memory boxes, ambient intelligence systems, and virtual reality applications. Such technologies allow dementia patients to remember their personal past in a way that wouldn’t be possible by merely relying on their biological memory, in that way aiding in preserving their narrative identity and positively contributing to their sense of well-being. (shrink)

IntroductionInternational sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research.MethodsWe performed a narrative review of the empirical evidence addressing (...) patients’ and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed, Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients’ and public attitudes were extracted from selected references and thematically categorised.ResultsTwenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread—though conditional—support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability.ConclusionsOur results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests. (shrink)

The success of medicine in the treatment of patients brings with it new challenges. More people live on to suffer from functional, chronic or multifactorial diseases, and this has led to calls for more complex analyses of the causal determinants of health and illness. Philosophical analysis of background assumptions of the current paradigmatic model. While these factors do not require a radical paradigm shift, they do give us cause to develop a new narrative, to add to existing narratives that (...) frame our thinking about medical care. In this paper we argue that the increased focus on lifestyle and shared decision making requires a new narrative of agency, to supplement the narrative of “the patient”. This narrative is conceptually linked to the developing philosophy of person-centred care. If patients are seen also as “agents” this will result in a substantial shift in practical decisions: The development and adoption of this narrative will help practitioners work with patients to their mutual benefit, harnessing the patients’ motivation, shifting the focus from treatment to prevention and preventing unnecessary and harmful treatments that can come out of our preoccupation with the patient narrative. It will also help to shift research efforts, conceptual and empirical, from “treating” and “battling” diseases and their purported “mechanisms” to understanding complex contributing factors and their interplay. (shrink)

BackgroundThe success of medicine in the treatment of patients brings with it new challenges. More people live on to suffer from functional, chronic or multifactorial diseases, and this has led to calls for more complex analyses of the causal determinants of health and illness.MethodsPhilosophical analysis of background assumptions of the current paradigmatic model.ResultsWhile these factors do not require a radical paradigm shift, they do give us cause to develop a new narrative, to add to existing narratives that frame our (...) thinking about medical care. In this paper we argue that the increased focus on lifestyle and shared decision making requires a new narrative of agency, to supplement the narrative of “the patient”. This narrative is conceptually linked to the developing philosophy of person-centred care.ConclusionsIf patients are seen also as “agents” this will result in a substantial shift in practical decisions: The development and adoption of this narrative will help practitioners work with patients to their mutual benefit, harnessing the patients’ motivation, shifting the focus from treatment to prevention and preventing unnecessary and harmful treatments that can come out of our preoccupation with the patient narrative. It will also help to shift research efforts, conceptual and empirical, from “treating” and “battling” diseases and their purported “mechanisms” to understanding complex contributing factors and their interplay. (shrink)

This paper examines narrative approaches to care within the context of dementia. It reviews the function of stories and explores some of the narrative genres that shape the cultural perceptions of dementia. We argue that narrative intelligence within healthcare is an important element in nurturing communal self‐identity for people living with dementia. Listening and responding to stories and the cultural framework that this encompasses is an embodied action that is not just related to cognitive recall but situates us within a (...) cultural community. People with dementia may have challenges in maintaining narrative legitimacy in the face of fractured stories and incoherent narratives. Health professionals can offer support in reframing and presenting counterstories that maintain identities that can potentially be marginalised, silenced and open to narrative foreclosure. This process requires health professionals to be attentive and responsive to how patients with dementia and their supporters construct and position the stories they tell and the meaning(s) they attach to them. (shrink)

This paper describes a pilot study of a new model for narrative medicine training, “community-based participatory narrative medicine”, which centers on shared narrative work between healthcare trainees and patients. Nine medical students and eight patients participated in one of two, five-week-long pilot workshop series. A case study of participants’ experiences of the workshop series identified three major themes: the reciprocal and collaborative nature of participants’ relationships; the interplay between self-reflection and receiving feedback from others; and the clinical and pedagogical implications (...) of the CBPNM model. Principles and proposed outcomes of the CBPNM model are presented. (shrink)

Aryeh Goldberg compellingly argues for a Narrative Coherence Standard (NCS) to bolster existing methods of assessing patients' mental capacity. But his account fails to distinguish between the cognitive abilities of children and adults; consequently, worries may be raised about the scope of the NCS, in particular when we consider child patients. In this article, I argue the NCS cannot plausibly apply to children. Since children's self-conception does not arrive fully formed — but rather is a product of both incomplete cognitive (...) development and socializing factors — I claim children may not possess a sufficiently intimate knowledge of self, and therefore a sufficiently coherent sense of self, as Goldberg demands. Therefore, we should either revise the NCS to accommodate children, adopt an incremental view of consent, or revert to the relevant form of the MacArthur competence criteria to establish children’s capacity to consent. (shrink)

In this essay, the author reflects on his development as a physician by recounting two patient narratives of patients he cared for as a third year medical student. In the process of telling these stories of sickness, the author also provides a window on medical practice in the 1980’s in an academic medicine center and how practices have changed. Decades before what has been dubbed “narrative medicine,” the author learned the power of words to shape relationships and promote (...) professional formation. (shrink)

Background: ICU patients’ family members are in a new, uncertain, and vulnerable situation due to the patient’s critical illness and complete dependence on the ICU nurses and physicians. Family members’ feeling of being cared for is closely linked to clinicians’ attitudes and behavior. Aim: To explore ICU nurses’ and physicians’ bedside interaction with critically ill ICU patients´ families and discuss this in light of the ethics of care. Research design: A qualitative study using participant observation, focus groups, and thematic (...) narrative analysis. Participants and research context: Data were gathered from July 2017 to August 2019, in four ICUs in Norway through 270 h of fieldwork and seven focus groups with ICU nurses and physicians. Ethical considerations: The Regional Committee for Medical and Health Research Ethics and the Norwegian Centre for Research Data approved the study. Findings: Quality of ICU family care depends on nurses’ and physicians’ attitudes, behavior, and personality traits. Three main themes were identified: being attentive, an active approach, and degree of tolerance. Discussion: The findings are discussed in light of the ethics of care and empirical research from the intensive care environment. Conclusions: This study shows that attentive, active, and tolerant clinicians represent a culture of ethical care that gives families greater freedom of action and active participation in patient care. Clinicians must not bear sole responsibility for this culture; it must have a firm basis in the hospital and ICU and be established through training, interprofessional reflection, and support of clinicians. (shrink)

Several studies have established the prevalence of discrimination upon the basis of weight in healthcare; however, these studies lack the element of human experience that makes addressing the issue vital to both individual and public health. Narrative medicine is an interdisciplinary field that utilizes powerful narrative skills and creativity to address the needs of those who seek and deliver healthcare, promoting healing, and self-reflection for both patients and physicians. This paper seeks to re-evaluate key studies regarding the issue of weight (...) discrimination in healthcare through the lens of narrative medicine. In doing so, it further integrates the aspect of human experience into the study of medical ethics in order to improve the lived experience of overweight individuals in medicine. (shrink)

This special issue aims to spotlight the individual, lived experiences of caregivers and those receiving care–areas often overshadowed by clinical and medicalized narratives within clinical ethics. Our aim is to enrich the discourse by incorporating stories and narratives of medical care and challenge existing clinical practices by emphasizing patient and practitioner experiences. Through a blend of clinical and academic insights, this issue provides phenomenological narratives, highlighting the importance of lived experiences in understanding and improving clinical caregiving (...) practices. The contributions, ranging from theoretical analyses to personal narratives, explore various aspects of caregiving. Each article contributes to a deeper understanding of the phenomenologies of care, advocating for a more inclusive, patient-centered approach in clinical ethics and practice. (shrink)

Als Vorstellung eines vom Wissen der Medizin abweichenden Behandlungsfalls können Fallberichte darauf Einfluss haben, welche Maßnahmen zukünftig als medizinisch indiziert gelten. Die öffentliche Präsentation der getroffenen Handlungen und Empfehlungen liegt in der Regel ausschließlich in der Hand ärztlicher Autor*innen – Betroffene kommen hingegen kaum zu Wort. Während in der klinischen Patientenversorgung bereits hohes Gewicht auf Patientenperspektiven und -erzählungen gelegt wird, scheinen sich diese Entwicklungen im Fallbericht als Form wissenschaftlicher Kommunikation so (noch) nicht widerzuspiegeln. Vor diesem Hintergrund wird im Folgenden aus (...) gattungstheoretischer Perspektive untersucht, welche Rolle Patientenperspektiven und -erzählungen nicht nur – wie in der bisherigen Forschung vor allem untersucht – im Bereich des Klinischen, sondern gerade auch des Kasuistischen und den damit verbundenen Fragen klinischer Indikationsreflexion und -empfehlung zukommen sollten. Dabei wird nicht zuletzt argumentiert, dass (Patienten-)Narrationen analog zu Indikationsstellungen gerade ein Moment des Ungesicherten und Singulären betonen, das für die Textsorte des Fallberichts und daraus abgeleiteten Indikationsüberlegungen von spezifischem Wert ist. (shrink)

Several clinical cases are presented to illustrate the phenomenon of discontinuity of personal narrative. These discontinuities are markedly and overtly present in the cases described, which include cases of bipolar disorder, incipient schizophrenia, dissociative disorder, and others. One of the patients suggests that they are also ubiquitous in people without psychiatric diagnoses.

Tōjisha research is a methodology intended to help psychiatric patients through dialogue. It was introduced in the context of community care in Bethel House (Hokkaido, Japan) in the early 2000s and later spread to other parts of Japan as well as abroad because of its originality and apparent therapeutic success. It offers patients a framework to investigate their own problems, symptoms, and delusions and to build a discourse around them. In this paper, I present a short account of tōjisha research (...) and I put it in the context of current debates over the benefits and drawbacks of narrative medicine. I argue that there is an original conception of the self and of empowerment of patients in tōjisha research compared to other models of narrative medicine. Finally, I mobilize these original aspects to address some rebuttals of narrative medicine. (shrink)

Recent studies have revealed a drop in the ability of physicians to empathize with their patients. It is argued that empathy training needs to be provided to both medical students and physicians in order to improve patient care. While it may be true that empathy would lead to better patient care, it is important that the right theory of empathy is being encouraged. This paper examines and critiques the prominent explanation of empathy being used in medicine. Focusing on (...) the component of empathy that allows us to understand others, it is argued that this understanding is accomplished through a simulation. However, simulation theory is not the best explanation of empathy for medicine, since it involves a limited perspective in which to understand the patient. In response to the limitations and objections to simulation theory, interaction theory is presented as a promising alternative. This theory explains the physicians understanding of patients from diverse backgrounds as an ability to learn and apply narratives. By explaining how we understand others, without limiting our ability to understand various others, interaction theory is more likely than simulation theory to provide better patient care, and therefore is a better theory of empathy for the medical field. (shrink)

Our country has celebrated democracy for more than a decade now, the democracy in which everyone enjoys all the basic human rights, including the right to an abortion. Public and private hospitals and some traditional healers are engaged in this act where some give preabortion and post-abortion counselling to their patients whilst others do not. It becomes a serious question of course to ask whether those patients who did not receive counselling, cope with life after the experienced trauma. By the (...) looks of things it seems very clear that the people who commit abortion have a special need for help in order to cope with life thereafter. Another question now is whether the little counselling that they receive in the hospital before and after an abortion is satisfactory to their individual needs. That is why the author’s focus is on the method or approach which the author thinks will better help the patients who find themselves in such a traumatic situation. The concentration is on the narrative-hermeneutical approach as one of the applicable approaches from the author’s point of view. (shrink)

Effective doctor patient relationships are predicated on doctors' relational engagement and affective/holistic communication with the patients. On the contrary, the contemporary healthcare and patient-clinician communication are at odds with the desirable professional goals, often resulting in dehumanization and demoralization of patients. Besides denigrating the moral agency of a patient such apathetic interactions and unprofessional approach also affect the treatment and well-being of the sufferer. Foregrounding multifaceted doctor-patient relationships, graphic pathographies are a significant cultural resource which recreate (...) the embodied moment of clinical encounters as they also lay bare qualitative tensions between patient' illness experience with doctor's professional understanding of the same. Taking these cues, the present article drawing theoretical postulates of Rita Charon, Deborah Lupton, and Havi Carel close reads Peter Dunlap-Shohl's My Degeneration: A Journey Through Parkinson's, Brian Fies' Mom's Cancer, and Stan Mack's Janet & Me: An Illustrated Story of Love and Loss to investigate the nature of doctor-patient relationship vis-à-vis communication and the implications of bad doctoring/communicative practices on patient identity and emotions. Furthermore, the article also examines the aesthetic and functional role of comics in bringing into relief the graphically mediated doctor-patient relationship. (shrink)

Many senior doctors have had little in the way of formal ethics training, but express considerable interest in extending their education in this area. This paper is the report of an initiative in continuing medical education in which doctors were introduced to narrative ethics. We review the theoretical basis of narrative ethics, and the structure of and response to the two-day workshop.

The art of medicine stimulates the attitude of mind which concedes that on certain issues the patient knows what is right for him or her, and the public senses what is best for it. Not because they are right, but because on these issues there is no absolute right. —Anthony MooreThe benefits of fine literature, narrative analysis, and the listening to and telling of stories in education are well known (Carson 2001; Guillemin and Gillam 2006; Hunter 1996; Moore 1978; (...) Nussbaum 1990). Literature must not be overlooked in the planning or the delivery of health education and care. Narrative opens readers’ minds by promoting a plethora of viewpoints about stories and life. Through the facilitation of student-centred activities students can critically mull over central points of the story. In discerning meaning, conversations between students are generated around the crucial question, “Whose story is it?” Coincidentally this question drives, or ought to drive, medical integrity.Practitioners m. (shrink)

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. (shrink)

This essay provides a literary history of the restitution narrative in colonial New England; using Cotton Mather's The Angel of Bethesda, I argue that Puritan medical texts employ theological and medical epistemologies to enable patient agency. In these texts, individuals must be involved in reforming the sinful behaviors that they believed caused their conditions, and must also engage in a form of public health by sharing their stories so that others may avoid future sins—and therefore illnesses. Ultimately, recognizing how (...) restitution has been historically defined allows for alternate understandings of recovery that place patients at the center. (shrink)

In 2018-2019, at the Keck School of Medicine of the University of Southern California, we developed and piloted a narrative-based health systems science intervention for patients living with HIV and medical students in which medical students co-wrote patients’ life narratives for inclusion in the electronic health record. The pilot study aimed to assess the acceptability of the “life narrative protocol” from multiple stakeholder positions and characterize participants’ experiences of the clinical and pedagogical implications of the LNP. Students were recruited (...) from KSOM. Patients and staff were recruited from the Maternal, Child, and Adolescent/Adult Center for Infectious Disease and Virology at Los Angeles County+USC Medical Center. Ten patients, seventeen students, and ten MCA staff participated in the pilot study. Qualitative methods were used to gather data from students’, patients’, and staff’s perspectives. Three themes emerged from the thematic analysis: patients’ life narratives conveyed their unique life experiences and voices; the protocol could result in wide-ranging effects on HIV care; the LNP enabled students to contribute value to patients’ healthcare. Across groups, participants considered the LNP an acceptable intervention. The LNP, its limitations, and implications for HIV care, narrative medicine, and health information technology are presented. (shrink)

The aim of this article was to explore identity struggles related to the experience of living with medically unexplained symptoms in illness narratives of patients with MUS. These patients pose therapeutic and communication challenges as their symptoms do not have an obvious underlying diagnosis. Previous studies have shown that their stories can best be described as ‘chaos narratives’, lacking a chronological development of symptoms or ‘legitimacy narratives’, through which patients seek to legitimize their invisible symptoms. The study (...) draws on 21 interviews with MUS patients. The examples were selected from two contrasting cases in order to show how the patients accomplish their identity struggles through distinctive discursive tools, such as metaphors, modality, personal pronouns, evaluative devices, as well as characteristic interactional structure, navigating around the three identity dilemmas: continuity and change, self and other, and agent or undergoer. (shrink)

This study examined narrative identity in a group of 81 patients with schizophrenia and 50 healthy controls through the recall of self-defining memories. The results indicated that patients’ narratives were less coherent and elaborate than those of controls. Schizophrenia patients were severely impaired in the ability to make connections with the self and extract meaning from their memories, which significantly correlated with illness duration. In agreement with earlier research, patients exhibited an early reminiscence bump. Moreover, the period of the (...) reminiscence bump, which is highly relevant for identity development, was characterized by fewer achievements and more life-threatening event experiences, compared with controls. A negative correlation was found between negative symptoms, number of self-event connections and specificity of narratives. Our results suggest that schizophrenia patients have difficulties to organize and extract meaning from their past experiences in order to create coherent personal narratives. (shrink)

This paper responds to a proposal for an intersectional approach to the clinical encounter between patient and medical provider. We agree that an intersectional framework offers new insights and information in the clinical encounter. Intersectionality involves awareness of the physician-patient dynamic, and understanding the various privileges and disadvantages of all parties involved, at a micro and macroscopic level. Yet, this analysis alone is insufficient to aid in the clinical encounter and risks harm. We worry about a clinician making (...) assumptions about her patient’s race, gender, economic status, and how these influence the patient’s own views of her life and health. We argue that a narrative supplement is a necessary element of intersectional clinical encounters. Prioritizing patient narrative curtails assumptions, builds trust, and improves care. (shrink)

Epistemic injustice sits at the intersection of ethics, epistemology, and social justice. Generally, this philosophical term describes when a person is wrongfully discredited as a knower; and within the clinical space, epistemic injustice is the underlying reason that some patient testimonies are valued above others. The following essay seeks to connect patterns of social prejudice to the clinical realm in the United States: illustrating how factors such as race, gender identity, and socioeconomic status influence epistemic credence and associatively, the (...) quality of healthcare a person receives. After describing how epistemic injustice disproportionately harms already vulnerable patients, I propose a narrative therapy intervention. This intervention can help providers re-frame their relationships with patients, in such that they come to view patients as valuable sources of unique knowledge. Though I identify this intervention as a valuable step in addressing clinical epistemic injustice, I call upon medical educators and practitioners to further uplift the voices, perspectives, and stories of marginalized patients. (shrink)

This study examined narrative identity in a group of 81 patients with schizophrenia and 50 healthy controls through the recall of self-defining memories. The results indicated that patients’ narratives were less coherent and elaborate than those of controls. Schizophrenia patients were severely impaired in the ability to make connections with the self and extract meaning from their memories, which significantly correlated with illness duration. In agreement with earlier research, patients exhibited an early reminiscence bump. Moreover, the period of the (...) reminiscence bump, which is highly relevant for identity development, was characterized by fewer achievements and more life-threatening event experiences, compared with controls. A negative correlation was found between negative symptoms, number of self-event connections and specificity of narratives. Our results suggest that schizophrenia patients have difficulties to organize and extract meaning from their past experiences in order to create coherent personal narratives. (shrink)

Stroke survivors undergo a thorough cognitive diagnosis that often involves administration of multiple standardized tests. However, patient’s narrative discourse can provide clinicians with additional knowledge on patient’s subjective experience of illness, attitude toward current situation, and motivation for treatment. We evaluated the methods of analyzing thematic content and story types in relationship to cognitive impairment in stroke survivors with no aphasia. Cognitive impairment was evaluated in comparison to a group of 25 patients with orthopaedic injury not involving the (...) brain. Our findings primarily show that higher elaboration on own cognitive problems, physical ailments or coping strategies in LHD patients and cognitive problems, emotional issues and circumstances of illness onset in RHD patients is related to deficits in executive functions and retrieval of information from memory. Furthermore, RHD patients who use more chaos story type show lower executive functioning. However, these results did not survive the significance threshold of p < 0.05 after Bonferroni adjustment for multiple comparisons. In conclusion, this study provides preliminary evidence that stroke survivor’s narrative can constitute an additional source of clinically-relevant information regarding patient’s experience of illness and attitude toward recovery. This knowledge can aid clinicians and nurses in everyday interactions with the patients and support individualized strategy to treatment. Still, the current results need be confirmed with future studies in a larger cohort of stroke patients. (shrink)

In this paper, I address the marginalization of Russian immigrant patients within the American medical system. I argue that their already vulnerable position as immigrants with serious illnesses or conditions is exacerbated by unfamiliar social, cultural, and psychological terrain. This complex situation calls for a revision of the clinician–patient model in favor of a more comprehensive approach that takes seriously their double marginalization and its effects. I claim that one such approach, narrative medicine, can begin to address their marginalized (...) status by attending to not only the symptoms of the body, but to the story of the illness experience. (shrink)

Socially extended knowledge has recently received much attention in mainstream epistemology. Knowledge here is not to be understood as wholly realised within a single individual who manipulates artefacts or tools but as collaboratively realised across plural agents. Because of its focus on the interpersonal dimension, socially extended epistemology appears to be a promising approach for investigating the deeply social nature of epistemic practices. I believe, however, that this line of inquiry could be made more fruitful if it is connected with (...) the critical notion of epistemic responsibility, as developed in feminist responsibilism. According to feminist responsibilists, at the core of epistemic responsibility is a critical disposition toward correcting epistemic injustice. This epistemic idea is highly relevant to the epistemological context of illness, where patient testimony is often disregarded. Hence, though restricted to the epistemological context of the experience of illness, this chapter delves into epistemic injustice and its robust mechanisms. I thus explore what responsible epistemic practices should involve in order to redress that injustice and how epistemic responsibility should be socially extended. The discussion proceeds as follows. First, by relying on Arthur Frank’s innovative work on illness narratives, I focus on chaotic bodily messages from patients overwhelmed by suffering and then explain why these messages should count as genuine narratives or testimonies despite their inarticulateness. Second, I elaborate on how epistemic injustice concerning such narratives (i.e., chaos narratives) is produced and reproduced, in particular how both a dominant sociocultural norm and our inherent vulnerability can contribute to its production and reproduction. Finally, I propose an extended form of epistemic responsibility that ameliorates this aspect. Laying particular emphasis on the epistemic role of mature empathy, I characterise the extended epistemic responsibility in terms of extended empathic knowledge. (shrink)