Introducing patient stories in health sciences education: the learning experiences of students.

BACKGROUND: It has been advocated that the development of medical school curricula must be informed by students, doctors in training, educators, employers, other health and social care professionals and patients, families and carers. Patients are widely employed to teach clinical and interpersonal skills, and while recognised as crucial in health education, they have mostly been offered a passive role. We assessed the impact of patients contributing personal illness narratives in the master curriculum of allied health care professionals on students' learning experiences. METHODS: We designed a module (Patient and Society) for a master's degree programme in Health Sciences at the University of Southern Denmark in collaboration with six patients. The patients contributed to the teaching by sharing and discussing their personal illness narrative. At the end of the module, as part of the exam, we asked the students to reflect on the patients' contribution to the module and how this affected their learning experiences. The 500-word exam responses of 29 students were analysed, in collaboration with six patients, using thematic analysis. RESULTS: Including patients' illness narratives lifted students' academic learning, and their personal and professional development. The stories brought theoretical concepts to life; it helped the students to obtain, retain, and apply academic knowledge. Actively and uninterrupted listening to patients' illness experiences promoted empathy and critical reflection on clinical practice. Faced with the impact of a disease on a person's life, seeing the healthcare system through a patient's lens made students reflect critically on the medical positivist model ruling the health care system focused on just fixing the medical problem with very little room for the illness experience. CONCLUSION: Our analyses support previous findings indicating that patient narratives are a powerful tool to achieve academic and professional development. Working with patients in health education has the potential to work towards a more inclusive epistemological stance in the health care system and health research.

Reconstructing the concept of empathy: an analysis of Japanese doctors' narratives of their experiences with illness.

The ability of doctors to empathise with patients is a crucial concern in establishing humanistic medicine. Therefore, the cultivation of this ability has been discussed extensively in medical education. One theory suggests that the experience of patienthood can increase empathy among doctors. This theory is supported by previous research that published doctors' illness narratives. However, the concept of empathy has been ambiguously defined in academic fields, including medicine; therefore, analysing how doctors experience 'empathy' in their interactions with patients is difficult. Our research question is how doctors who became patients describe the relationship between their illness experiences and the interactions with patients after their illness. To this end, this paper initially tracks the debates on 'empathy' in medicine and other disciplines, to develop a lens for analysing doctors' illness narratives. Next, we conduct a narrative analysis of illness stories from 18 Japanese medical doctors who became patients. Our analysis supports the traditional idea that an illness can enable a doctor to become more empathetic. However, this is overly simplistic; how doctors experience and subsequently process their illness is more complex. Moreover, this notion can disregard doctors' suffering in these circumstances, and fail to represent the often-lengthy process of mastering 'empathy' based on their experiences. Therefore, our analysis deconstructed the concept of 'empathy', showing that it can appear in various ways. Further research is required to elucidate how empathy is cultivated during the process of transformation of doctors' illnesses, focusing on their communities and practices.

Overcoming the monster! Perceptions of physiotherapy students regarding the use of stroke master plots for building therapeutic relationships; a vignette study.

BACKGROUND: Narrative master plots identify illness stories which are recognisable within clinical settings. Responses to different master plots by physiotherapy students can lack empathy and need to be understood further. One narrative master plot for people with stroke that has not been well studied is called 'overcoming the monster'. Research is needed to understand physiotherapy students' reactions to this master plot. OBJECTIVE: To examine the responses of physiotherapy students to three variations of the master plot called 'overcoming the monster' generated from patients who have had a stroke. METHODS: A qualitative narrative vignette study was undertaken. A university in the West Midlands (England) was used to access physiotherapy students on the pre-registration programs. A purposive sample of students volunteered to complete a single vignette questionnaire at one time point. The vignette provided three unique examples of the master plot overcoming the monster as told by people with stroke. Students responded to each by asking specific questions that captured demographic information and questions that captured reactions to the different versions of the master plot. Categorical-content narrative analysis was undertaken. RESULTS: Thirty-two first year (BSc) students, thirty-nine first year (pre-registration) MSc students and nineteen third year (BSc) students participated in this study. Neither first year groups had undertaken any clinical placement hours. All third-year students had finished the required clinical placement hours for the physiotherapy course. Students consistently demonstrated empathy towards this master plot. Students often valued the variant of the story which illustrated how difficulties following stroke could be experienced as an 'adventure'. Students also valued and were motivated by the story variant that considered a family member as a source of motivation and encouragement. The story variant which focused on the shortcomings of the health care system was more often related to by the final year BSc students and MSc students. However, first year students, particularly BSc students, reported being more emotionally affected by the vignette. CONCLUSION: All variants of the master plot overcoming the monster appeared to generate empathetic responses. This is important because it highlights the value of students' understanding the patients' story and challenges or 'monsters' faced. Therapeutic relationships will benefit from training physiotherapy students on the importance of listening and exploring challenges people with stroke face.

The Dreamwork of the Symptom: Reading Structural Racism and Family History in a Drug Addiction.

A key tenet of critical health research is that individual symptoms must be considered in light of the social and political contexts that shape or, in some cases, produce them. Precisely how oppressive social forces give rise to individual symptoms, however, remains challenging to theorize. This article contributes to debates over the interpretation of symptoms through a close reading of the case of Leon, an African American man struggling with an addiction to crack cocaine. Leon presented a complex illness narrative in which his addiction was clearly a product of structural racism, but also the result of dynamics within his family. Drawing on critical reevaluations of Freud's concept of the dreamwork, I call attention to the surface elements of Leon's narrative-what I term the surface of the symptom-and to the formal mechanisms by which latent contents (such as the social, the political, and the personal) are transformed into the manifest form of his symptom. This formal mode of reading offers a productive way of approaching questions of demystification and interpretation, one that holds in tension the register of social causation with the singularities of individuals and their symptoms.

In their own words: A narrative analysis of illness memoirs written by men with prostate cancer.

By drawing on a narrative analysis of 11 autobiographical illness memoirs, this article investigates the complexities of what it means to live with prostate cancer over a period of time. Acknowledging how cancer disrupts everyday life, we focus on the day-to-day experiences and struggles that take place inside and outside the hospital. By building on illustrative quotes from the memoirs, we discuss different facets of cancer as a lived experience. Our findings show that men reconstruct their identity in the memoirs in response to the disruptive nature of cancer by including various identities from previous times. They describe a relationship with their cancer that is fluid and fitful and often depends on place, time and circumstances. We also found that the 'not knowing' of prostate cancer creates uncertainty, which can take different forms, transcends time and is shaped through medical technologies, continual testing and disagreeing doctors. Prostate cancer is often seen as easily treatable, but our findings call for a different way of looking at its impact. We argue that memoirs, written by men themselves, make it palpable what it means to live with cancer. As such, illness memoirs offer a way to advance our sociological understanding of cancer-as-a-lived experience.

Interrupting Patients in Healthcare Settings: What is Being Interrupted?

Scientific literature since the 1980s examines the phenomenon of healthcare professionals interrupting patients: at which second patients opening expositions are interrupted and how long they take if unrestrained. Although the goal of this literature is strictly numerical-determining interventions' length-, it reveals a number of its authors' views and preferences. Our discourse analysis reveals, first, that, often in between the lines, this literature suggests reasons for letting patients speak freely and tries to dismantle the myth of the overly-loquacious patient. Second, by turning to some philosophical inquiries into the notion of "interruption," we explore how, within this literature, the ultimate reason for interrupting patients and silencing several of their concerns is often the fear of a certain medical logic being interrupted-a logic that dates back to Vesalius and Bichat, and that informs nowadays biomedicine: patients' speech is valuable as long as it contributes to a diagnosis in the form of the identification of an underlying tissue damage. That is, this literature presents the interruption of patients as a device of claiming power on the part of an eminently biomedical approach to illness. The paper provides further reasons for not interrupting patients proposed by the biopsychosocial model, "narrative medicine," and anthropologists who study the functions of illness narratives.

"Accompanied Only by My Thoughts": A Kantian Perspective on Autonomy at the End of Life.

Within bioethics, Kant's conception of autonomy is often portrayed as excessively rationalistic, abstract, and individualistic, and, therefore, far removed from the reality of patients' needs. Drawing on recent contributions in Kantian philosophy, we argue that specific features of Kantian autonomy remain relevant for medical ethics and for patient experience. We use contemporary end-of-life illness narratives-a resource that has not been analyzed with respect to autonomy-and show how they illustrate important Kantian themes, namely, the duty to know oneself, the interest in elaborating universalizable principles, and the emphasis on ideals as points of orientation that guide behavior without ever being fully realized. As Kant does, the patient-authors discussed here perceive the end of life as a moment to reflect on the constitutive principles which have governed that life, thereby offering a privileged moment to pursue self-knowledge. We argue that bioethical conceptions of autonomy stand to gain if they revise their conception of Kantian moral philosophy as too formal, abstract, and detached from emotions and personal relationships to be helpfully applied.

Alda Merini's Memoir: Psychiatric Hospitalization, Institutional Violence And The Politicization Of Illness In 20th Century Italy.

In 1964, the Italian poet Alda Merini was hospitalized in a mental hospital in Milan as the result of a violent fight with her husband. Merini would spend ten years in and out of hospital, while her relationship with her family and with the literary circles in which she moved deteriorated. Merini's experience in the asylum is narrated in her memoir L'altra verità. Diario di una diversa (1986). Through an analysis of some crucial passages in the memoir, this article seeks to demonstrate that Diario is a work charged with both literary and historical value that deserves more scholarly attention. Merini's memories shed new light on the situation of psychiatric patients, and especially of women, in Italy before and after Basaglia's reforms on mental institutions. Demonstrating how the abuse that she suffered in the hospital reflects society's attitudes toward mental illness, disability, and women, Merini shows that the type of trauma narrative that is produced under institutions of coercive control - such as the mental asylum - will often be one of resistance to oppression.

Illness Narratives of Children Living with HIV Who Do Not Know Their HIV Status in Ghana: I'm Sick, But I Don't Know the Sickness-A Qualitative Study.

Despite available guidelines for disclosure of HIV status to children, most children living with HIV are unaware of their diagnosis. We sought to characterize the concepts of illness and treatment among children living with HIV who do not know their status. As part of the Sankofa trial we interviewed 435 children aged 6-18 enrolled in clinical care at pediatric HIV clinics at two teaching hospitals in Ghana. Theoretic thematic analysis generated themes among responses. The children believe they come to the clinic to collect medication, to address specific symptoms, to prevent and treat 'sickness', or as part of their routine. Most children learned of their 'illness' from a family member. A majority (73.5%) of children had never talked about their 'illness' with anyone else; many feared consequences. Children living with HIV who do not know their status exhibit signs of anticipated and internalized stigma regarding their unknown 'illness.' An understanding of the way children conceptualize their illness has implications for health promotion and the provision of appropriate information to children living with HIV.ClinicalTrials.gov Identifier NCT01701635.

RESUMEN: A pesar de las pautas disponibles para la divulgación del estado del VIH a los niños, la mayoría de los niños que viven con el VIH desconocen su diagnóstico. Intentamos describir los conceptos de enfermedad y tratamiento entre los niños que viven con el VIH que no conocen su estado de infeccion. Como parte del ensayo Sankofa, entrevistamos a 435 niños de 6 a 18 años inscritos en atención clínica cuidado en clínicas pediátricas de VIH en dos hospitales docentes en Ghana. El análisis temático teórico generó temas entre las respuestas obtenidas. Los niños creen que vienen a la clínica a recoger medicamentos, a tratar síntomas específicos, a prevenir y tratar "condiciones" o como parte de su cuidado rutinario. A traves de entrevistas, aprendimos que la mayoría de los niños aprendieron de su "enfermedad" de un miembro de la familia. Esta mayoría (73.5%) nunca habían hablado sobre su "enfermedad" con nadie más; debido a muchas consecuencias temidas. Los niños que viven con VIH que no conocen su estado, exhiben signos de estigma anticipado e internalizado con respecto a su "enfermedad" desconocida. El entender la forma en que los niños conceptualizan su enfermedad tiene implicaciones para la promoción de la salud y el suministro de información adecuada a los niños que viven con el VIH.

Illness Narratives Through the Eyes of Parents of Children With End-Stage Renal Disease.

The purpose of the present study was to learn about the experiences of parents of children diagnosed with renal failure at different stages of the disease in order to get closer to the process they carry out as caregivers. Semi-structured interviews were conducted with 12 parents and analyzed using interpretative phenomenological analysis method. Data analysis revealed two axes: spatial and temporal. The present article focuses on the temporal axis comprised of diagnosis, coping, and remission. These phases are discussed according to Frank's illness narratives of chaos, quest, and restitution, representing stages in the sequence people undergo while coping with a disease. However, in the case of incurable diseases, such as end-stage renal disease, when there is no restitution and regression in the medical condition is followed by chaos, we suggest a new narrative structure, the Sisyphean Narrative, to symbolize the recurring nature of struggling with the disease.

Stumbling Into Adulthood: Learning From Depression While Growing Up.

Depression manifests in distinct ways across the life course. Recent research emphasizes how depression impedes development during emerging adulthood. However, our study-based on 40 interviews with emerging adults from multiple regions in the United States, analyzed following grounded theory-suggests a more complex narrative. Increasing experience with cycles of depression can also catalyze (a) mature perspectives and coping mechanisms that protect against depression's lowest lows; (b) deeper self-knowledge and direction, which in turn promoted a coherent personal identity; and (c) emergence of a life purpose, which fostered attainment of adult roles, skill development, greater life satisfaction, and enriched identity. Our synthesis reveals how depression during emerging adulthood can function at once as toxin, potential antidote, and nutritional supplement fostering healthy development. Our central finding that young adults adapt to rather than recover from depression can also enrich resilience theory, and inform both social discourse and clinical practice.

Feeling lucky: hierarchies of suffering and stories of endometrial cancer in a Danish context.

Illness stories are a prime analytical way of understanding patient perspectives on cancer. Nevertheless, limited studies have focused on stories of endometrial cancer. An ethnographic study including participant observation and interviews among 18 Danish women with endometrial cancer was conducted to examine prevalent stories and the ways the women responded to them. In this article, the analysis focuses on two exemplary cases, which present a line of issues related to the kinds of experiences that suffering includes. Findings illustrate that feelings of luck were central to the experience of being diagnosed, treated and cured, which was related to the way health professionals framed endometrial cancer as favourable through notions of curable/incurable, trivial and gentle/invasive and brutal, and aggressive/non-aggressive. Drawing upon the concept of a 'hierarchy of suffering', we exemplify how women tended to scale own experiences of suffering against others', leading some to believe they were not in a legitimate position to draw attention to themselves nor seek help and support, despite adverse physical, psychosocial effects. Thus, feelings of being lucky were intertwined with a sense of ambivalence. We conclude by discussing how suffering arises within a moral context, suggesting that the ways we speak of cancer may make some experiences unspeakable. This calls for increased clinical attention to more diverse narratives of cancer.

Illness recognition and appropriate care seeking for newborn complications in rural Oromia and Amhara regional states of Ethiopia.

BACKGROUND: Ethiopia has made significant progress in reducing child mortality but newborn mortality has stagnated at around 29 deaths per 1000 births. The Maternal Health in Ethiopia Partnership (MaNHEP) was a 3.5-year implementation project aimed at developing a community-oriented model of maternal and newborn health in rural Ethiopia and to position it for scale up. In 2014, we conducted a case study of the project focusing on recognition of and timely biomedical care seeking for maternal and newborn complications. In this paper, we detail the main findings from one component of the case study - the narrative interviews on newborn complications. METHODS: The study area, comprised of six districts in which MaNHEP had been implemented, was located in the two most populous federal regions of Ethiopia, Oromia and Amhara. The final purposive sample consisted of 16 cases in which the newborn survived to 28 days of life, and 13 cases in which the newborn died within 28 days of life, for a total sample size of 29 cases. Narrative interview were conducted with the main caregiver and several witnesses to the event. Analysis of the data included thematic content analysis and the determination of care seeking pathways and levels and timeliness of biomedical care seeking. RESULTS: Mothers and other witnesses do recognize certain symptoms of newborn illness which they often mentioned in clusters. The majority considered the symptoms to be serious and in some case hopeless. Perceived causes were mostly natural. Forty-one percent of care seekers sought timely biomedical care in the neonatal period. Surprisingly, perceived severity did not necessarily trigger care seeking. Facilitators of biomedical care seeking included accessibility of health facilities and counseling by health workers, whereas barriers included perceived vulnerability of newborns, post-partum restrictions on movements, hopelessness, wait-and-see atttitudes, poor communication and physical inaccessibility of health facilities. CONCLUSIONS: Symptom recognition and care seeking patterns indicate the need to strengthen focused locally relevant health messages which target mothers, fathers and other community members, to further enhance access to health care and to improve referral and quality of care.

Dualities of dementia illness narratives and their role in a narrative economy.

The concept of 'narrative economies' has recently been proposed as a set of exchange relationships that, through biography and story-telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre-existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia - like our participants - being called upon to account for their experience, as a means of developing a politicised 'collective illness identity'. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.

Distinct and Untamed: Articulating Bulimic Identities.

Bulimia nervosa and anorexia nervosa are inextricably linked, with substantial clinical and epidemiological overlaps. Yet, while anorexia has been analyzed extensively in medical anthropology, bulimia remains under-theorized. This is, perhaps, because, compared to self-starvation, binge eating presents a logic of practice that is difficult to reconcile with culturally reified notions of self-control, transcendence, and hard work. Thus, although anthropologists have analyzed anorexic subjectivities as imbued with a sense of cleanliness and purity, moral superiority, and heroics, similar analyses have not been extended to bulimic subjectivities; instead, bulimia has been subsumed, as a tangential disorder, into analyses of anorexia. In this paper, I aim to move bulimic identities from the margins to the centre of anthropological analysis. Based on participant narratives, I analyze bulimic identity as articulated by six Israeli women who identified as bulimic and received treatment for bulimia. The women's narratives show that bulimic identity is aligned with concepts of distinct selfhood. For these women, to be bulimic was to be framed as 'abnormal'; but this 'abnormality', albeit a source of social stigma and shame, held meanings that went beyond pathology. Through the claiming of bulimic identity, the women positioned themselves as untamed, non-conforming subjects, who acted against gendered and classed expectations-and even against the limitations of the body. Their constructions of bulimic distinction highlight the need for anthropological work that situates bulimia not as a footnote to anorexia, but as a structurally and culturally meaningful condition in its own right.

Does electromagnetic hypersensitivity originate from nocebo responses? Indications from a qualitative study.

Idiopathic Environmental Intolerance attributed to Electromagnetic Fields (IEI-EMF) is a condition in which symptoms are attributed to electromagnetic field (EMF) exposure. As electro-hypersensitive (EHS) people have repeatedly been observed, during provocation trials, to report symptoms following perceived rather than actual exposure, the hypothesis has been put forward that IEI-EMF originates from psychological mechanisms, especially nocebo responses. This paper examines this hypothesis, using data from a qualitative study aimed at understanding how EHS people come to regard themselves as such. Forty self-diagnosed EHS people were interviewed. A typified model of their attribution process was then elaborated, inductively, from their narratives. This model is linear and composed of seven stages: (1) onset of symptoms; (2) failure to find a solution; (3) discovery of EHS; (4) gathering of information about EHS; (5) implicit appearance of conviction; (6) experimentation; (7) conscious acceptance of conviction. Overall, symptoms appear before subjects start questioning effects of EMF on their health, which is not consistent with the hypothesis that IEI-EMF originates from nocebo responses to perceived EMF exposure. However, such responses might occur at the sixth stage of the process, potentially reinforcing the attribution. It remains possible that some cases of IEI-EMF originate from other psychological mechanisms.

The self as capital in the narrative economy: how biographical testimonies move activism in the Global South.

This article analyses and theorises the practice of biographical storytelling of HIV-positive AIDS activists in South Africa. Combining research in illness narratives, studies of emotions in social activism and analysis of global health institutions in Africa, I explore how biographical self-narrations are deployed to facilitate access to resources and knowledge and thus acquire material and symbolic value. I illustrate my argument through the analysis of the case of an AIDS activist who became a professional biographical storyteller. Based on the analysis which I claim to represent wider dynamics in human-rights-based health activism in the Global South, I propose the concept of narrative economies by which I mean the set of exchange relationships within which biographical self-narrations circulate and produce social value for individuals and organisations.

When Care is a "Systematic Route of Torture": Conceptualizing the Violence of Medical Negligence in Resource-Poor Settings.

Descriptions of patient mistreatment fill ethnographic accounts of healthcare in resource-poor settings. Often, anthropologists point to structural factors and the ways that the global political economy produces substandard care. This approach makes it difficult to hold parties accountable when there is blatant disregard for human life on the part of individuals providing care. In this article, I draw on the illness narrative of Magaly Chacón, the first HIV positive individual in Bolivia to file charges of medical negligence after failing to receive care to prevent mother-to-child transmission. Magaly's narrative demonstrates how structural conditions are often used to explain away poor patient outcomes, shifting attention away from and normalizing the symbolic violence that also perpetuates substandard care of marginalized patients. I use Magaly's accusations to interrogate how defining acts of mistreatment as medical negligence can be a productive exercise, even when it is difficult to disentangle structural constraints from blatant acts of negligence. Defining who is negligent in resource-poor settings is not easy, as Magaly's case demonstrates. However, Magaly's case also demonstrates that accusations of negligence themselves can demand accountability and force changes within the local structures that contribute to the systematic mistreatment of marginalized patients.

Conflicting Notions on Violence and PTSD in the Military: Institutional and Personal Narratives of Combat-Related Illness.

Research indicates that soldiers struggling with PTSD under-utilize mental health care. Quantitative studies of barriers to care point to the importance of soldiers' beliefs about mental health and mental health interventions in their care-seeking behavior, yet these studies still struggle to understand the particular beliefs involved and the ways they impact care-seeking behavior. This preliminary study makes a start in examining these questions through qualitative literature analysis. It maps out dominant messages surrounding PTSD in military mental health interventions, and explores how they can both shape and conflict with soldiers' personal notions. It does so by analyzing these messages and notions as institutional and personal (illness) narratives. Institutional military PTSD-narratives, which draw on mainstream scientific and clinical models, appear to communicate contradictory notions on the meanings of violence and its psychological consequences, often without acknowledging these contradictions. As such, these narratives seem to shape struggles of soldiers, both within themselves and with the military institution. The identified conflicts indicate, contrary to the individualizing and decontextualizing focus of dominant PTSD-understandings, that soldiers' struggles also have social and moral dimensions. This has important implications for both research into PTSD-interventions and understandings of PTSD as such.

Reconceptualizing cancer survivorship through veterans' lived experiences.

This study assessed the biopsychosocial impact of cancer on Veteran older adult survivors by garnering their accounts of their illness experiences. A narrative analysis of 73 cancer diagnosis and treatment stories reveals five "paths” Veterans are taking 18 months postdiagnosis. These paths indicate that cancer survivorship cannot be conceptualized as a one-size-fits-all experience but rather is a process of Veterans understanding and making sense of the effects of cancer on their lives. Our future goal is to develop a screening tool to help clinicians identify a patient's "path" to tailor survivorship care to meet specific needs.