Researchers and activists are increasingly drawing on the practice of collecting, archiving, and sharing stories to advance social justice, especially given the low cost and accessibility of digital technologies. These practices differ in their aims and scope yet they share a common conviction: that digital storytelling is empowering especially when curating and disseminating life stories of marginalized groups. In this paper, I question this conviction and ask: is it possible that such practices take away from what is found to be (...) meaningful and worthwhile in practices of storytelling and listening, and, if so, how? To answer this question, I argue for a renewed attentiveness to story scenes, highlighting the inherently relational nature of storytelling and listening. I examine this relational nature through a fictional account that exemplifies storied encounters and demonstrates the ethical issues they entail through three themes—reciprocity, responsiveness, and communion—borne out of the plurality of philosophical positions on what it means to relate to another. I explain each of these themes as a starting point for thinking through how digital storytelling may be just, with implications for participatory methods in science and technology studies, design studies, and human-computer interaction inclusive of participatory design, co-design, ethnographic research, and participatory action research. (shrink)

Applied ethicists’ interest in narratives and narratives ethics has grown steadily. Some thinkers position narratives as supplements to ethics, while others see narratives as new form of ethics comparable to virtue or deontological ethics. In this paper, I analyze some of the main ethical claims being made on behalf of business and literary narratives from the perspective of Aristotelian virtue ethics. I argue that, while narratives can significantly contribute to the development of our character, to a better grasp of virtues (...) and vices, and to a clarification of a virtue ethics framework, this contribution is highly nuanced. In particular, Aristotelian virtue ethics enable us to sensibly and helpfully distinguish the ethical value of _narratives within business ethics_ from _narrative business ethics _per se. This paper has three parts. Part One offers a provisional definition of narrative and sketches some of the large claims that literary critics, philosophers, theologians, and others have made for narratives’ relevance to and value for ethics. In Part Two, using narratives drawn from business and literature, I take up each of these claims in turn and examine whether the claim makes sense and is compelling from an Aristotelian virtue ethics perspective. Part Three gathers together the threads of the arguments in Part Two to specify the modest, but nonetheless significant, legitimate roles narratives might play within Aristotle’s virtue ethics. I also point to some limitations inherent in an Aristotelian critique of narrative ethics and suggest some questions for future research. (shrink)

What are the challenges of turning data subjects into research participants—and how can we approach this task responsibly? In this paper, we develop a methodology for studying the lived experiences of people who are subject to automated scoring systems. Unlike most media technologies, automated scoring systems are designed to track and rate specific qualities of people without their active participation. Credit scoring, risk assessments, and predictive policing all operate obliquely in the background long before they come to matter. In doing (...) so, they constitute a problem not only for those subject to these systems but also for researchers who try to study their experience. Specifically, we identify three challenges that are distinct to studying experiences of automated scoring: limited awareness, embeddedness, and ongoing inquiry. Starting from the observation that coming to terms with one's position as a data subject constitutes a form of learning in its own right, we propose a research strategy called critical companionship. Originally articulated in the context of nursing research, critical companionship invites us to accompany a data subject over time, paying critical attention to how the participant's and the researcher's inquiries complicate and constitute each other. We illustrate the strengths and limitations of this methodology with materials from a recent study we conducted about people's credit repair practices and sketch a set of sensibilities for studying contemporary scoring systems from the margins. (shrink)

The use of qualitative research in empirical bioethics is becoming increasingly popular, but its implementation comes with several challenges, such as difficulties in aligning moral epistemology and methods. In this paper, we describe some problems that empirical bioethics researchers may face; these problems are related to a tension between the different poles on the spectrum of scientific paradigms, namely a positivist and interpretive stance. We explore the ideas of narrative construction, ‘genres’ in medicine and dominant discourses in relation to empirical (...) research. We also reflect on the loss of depth and context that may occur with thematic or content analyses of interviews, and discuss the need for transparency about methodologies in empirical bioethics. Drawing on insights from narrative approaches in the social sciences and the clinical-educational discipline of Narrative Medicine, we further clarify these problems and suggest a narrative approach to qualitative interviewing in empirical bioethics that enables researchers to ‘listen (and read) in new ways’. We then show how this approach was applied in the first author’s research project about euthanasia decision-making. In addition, we stress the important ethical task of scrutinizing methodologies and meta-ethical standpoints, as they inevitably impact empirical outcomes and corresponding ethical judgments. Finally, we raise the question whether a ‘diagnostic’, rather than a ‘problem-solving’, mindset could and should be foregrounded in empirical ethics, albeit without losing a commitment to ethics’ normative task, and suggest further avenues for theorizing about listening and epistemic (in)justice in relation to empirical (bio)ethics. (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)

After describing the disorder of psychopathy, I examine the theories and the evidence concerning the psychopaths’ deficient moral capacities. I first examine whether or not psychopaths can pass tests of moral knowledge. Most of the evidence suggests that they can. If there is a lack of moral understanding, then it has to be due to an incapacity that affects not their declarative knowledge of moral norms, but their deeper understanding of them. I then examine two suggestions: it is their deficient (...) practical reason or their stunted emotions that are at fault. The evidence supports both explanations. I conclude with an overview of the debate concerning whether they are morally or legally responsible for their actions. (shrink)

Narrative medicine is predicated on the importance of narrative to human life. Although that in itself is not controversial, an extension of this principle that has sprung up in narrative psychiatry—namely, that by coming to imagine a different life story one can become a different person—ought to be. One reason one cannot remake one’s life in the image of a story is that life is not to be mistaken for a story in the first place. The seminal study of psychotherapy, (...) Persuasion and Healing, although recommending that the demoralized absorb more uplifting stories about themselves, appears to recognize some limit to the possibility of modeling life on story. The same study likens therapeutic stories to placebos, but as it happens, placebos themselves have their limits, alleviating symptoms but not curing or “healing.” In order for someone to become a different person through the agency of the placebo effect, it would have to be more robust than it is. The argument that life follows narrative is an ironic one for a discipline devoted to narrative to make, given the salience in the tradition of the novel, from Don Quixote forward, of works that explore the fallacies of that presumption. In keeping with its attention to narrative, this article challenges the use of a short story by Chitra Divakaruni as an illustration of the principles of narrative psychiatry. (shrink)

In this article, we examine how white working-class women reimagine gender in the face of social and economic changes that have undermined their ability to perform normative femininity. As blue-collar jobs have disappeared, scholars have posited that white working-class men and women have become increasingly isolated, disconnected from institutions, and hopeless about the future, leading to a culture of despair. Although past literature has examined how working-class white men cope with the inability to perform masculinity through wage-earning and family authority, (...) gender has been undertheorized in these discussions, treating working-class women’s and men’s despair interchangeably. Drawing on 37 in-depth interviews conducted in a former coal-mining town in northeastern Pennsylvania, we identify three overarching strategies that women deploy in their life histories to cope with disruption: embracing pain as an opportunity for self-growth; dispelling shame and striving for equality; and enduring suffering. These strategies allow women to feel hopeful and worthy as they confront enormous challenges, whether starting over following relationship dissolution, learning to be independent from men, or simply surviving hardship for the sake of their children. We explore the implications for recreating gender identity in each strategy and question how different strategies might serve to protect women from, or alternatively solidify, sentiments of despair. (shrink)

The thesis contends that education and literary studies can make a valuable contribution to ethics and ethical development of persons, their relations with others and with the world. It promotes an approach to ethics education through dialogic enquiry based on theories and practices associated with comparative literature and philosophical enquiry. These involve students sharing experiences and meanings as they participate in interpretive communities and communities of philosophical enquiry. There are two main components to the research: ethically focused studies of literary (...) texts and the design, implementation and evaluation of a module in Ethics Education using literature and film as stimuli for Dialogic Enquiry. The literary analyses are influenced by reader-response theory. While recognizing the importance of the author or the contexts of production and receptions of texts, reader-response theory focuses on the experience of the reader as she/he responds to literary texts, and on her/his role in actively co-authoring the meaning of texts. Readers may form or join interpretive communities that share an ethos of practice. The literary narrative fictions studied include fairy tale, contemporary European cinema and neo-Western crime drama, each of which offers a valuable way of thinking about education. The module in ethics education, designed for Transition Year students, is based on movements in Philosophy with Children. Students formulate and explore ethical questions raised in response to themes or issues of literary texts. Dialogic communities of ethical inquiry may emerge from this. Students, participating in these dialogic communities of ethical inquiry, get to test out and develop their moral sense, understood in terms of reason, feeling, memory and imagination. The literary analyses demonstrate the ethically educative promise of literary texts, and the responses of students to this course and the growth of their ethical engagement suggest that this is a promising approach to ethics education. Such an educational experience may be ethical in matter, theory and practice and continue to find expression as praxis beyond the covers of books and walls of classrooms. (shrink)

Narrative ethics holds that if you ask someone what goodness is, as a basis of action, most people will first appeal to various abstractions, each of which can be defined only by other abstractions that in turn require further definition. If you persist in asking what each of these abstractions actually means, eventually that person will have to tell you a story and expect you to recognize goodness in the story. Goodness and badness need stories to make them thinkable and (...) to translate them into individual and collective actions. Yet after more than two decades of considering the issue, I do not believe that a collection of stories can by itself guide actions in ways that are sufficient to respond to ethical troubles in institutional settings. The question will always remain open for me, but my present belief is that narrative bioethics is always hyphenated, in the sense that guidance from stories needs to be allied with other ethical guidance. Each side of the hyphen qualifies the other side. The hyphenation I will argue for in this essay is “narrative-deontology.”. (shrink)

Most workers report that they are alienated from their jobs and find their workplaces to be stifling and uninviting. Given this condition, the introduction of computer technology, including AI, will only make matters worse, unless a more humane organizational culture is created. The key point in this article is the need to produce a responsible technology, so that employees are not further overworked and manipulated. To achieve this end, phenomenology is invoked, particularly the life world, to provide technology with a (...) human foundation. In practice, this shift in philosophy means that when AI is introduced into an organization, workers have a central role in the design, implementation, and evaluation of this technology. Computer technology can thus promote human flourishing instead of control and alienation in workplaces. (shrink)

Once upon a time, medicine dismissed narrative as unimportant and uninteresting. Then, in the late 1980s, physicians and scholars became interested in how the study of narrative could enhance our understanding of illness and health care, and the field that came to be known as “narrative medicine” developed. Some of this scholarly activity focused on the idea of narrative ethics.After a flurry of activity around the turn of the twenty‐first century, narrative ethics seemed to stall. The general interest in narrative (...) in medicine continued but with few new ideas on how one might use narrative toward ethical ends. In the last few years, however, forward momentum has returned. The timing seems appropriate, therefore, for a “state of the field” report of sorts. (shrink)

The literature on rational suicide (RS) holds that if a rational person wishes to suicide under circumstances deemed rational, there is no moral reason to prohibit a person from suiciding. There are forty years of literature dedicated to establishing what rational suicide is and demonstrating its moral permissibility. What is shocking is that in this literature, almost no attempts are made to include the perspectives of mental health users. Drawing from the work of Hilde Lindemann, I argue that ignoring of (...) the perspectives of mental health users constitutes a form of erasure and oppression that must be rectified. (shrink)

Literary texts activate ones’ metaphorical sensibilities to the myriad possibilities for reflecting on our own lives while inviting us to imagine the complex experiences of others. Readers’ ability...

The ethics of telling stories about other people become questionable as soon as humans learn to talk. But the stakes get higher when health care professionals tell stories about those whom they serve. But for all the problems that come with such stories, I do not believe it is either practical or desirable for bioethicists to attempt to legislate an end to this storytelling. What we need instead is narrative nuance. We need to understand how to tell respectful stories in (...) which the patients are fully acknowledged fellow participants, not one‐dimensional objects of a knowing gaze. The problem is not narration itself but a particular version of narrational privilege, and getting rid of that would have benefits far beyond practices of writing case studies. In this essay, I first offer four considerations that I have found either omitted or underemphasized in discussions of the ethics of telling stories about patients. I then sketch a model of medical storytelling that might be the basis for shifting the ethical question from whether to how. (shrink)

Over one-third of older adults in many countries have a companion animal, and pets may harbor health-promoting potential. Few studies have considered pet-ownership in relation to economic vulnerability, and pet-ownership has not been often considered within policy efforts to promote ageing-in-place. We conducted a mixed methods case study to understand perspectives of both community agencies that support ageing-in-place and older adults themselves. A shortage of affordable, appropriate pet-friendly housing emerged as a challenge, even when framed as a legitimate choice and (...) preference for many older adults. In this manuscript, we share the trajectories of three economically vulnerable older adults whose affordable housing needs became entangled with commitments to pets. Guided by dialogical narrative methodology, we offer each narrative as a short vignette to illustrate the extent to which older adults will practice ‘more-than-human solidarity’ for a pet, even when their own well-being is compromised as a result; and highlight incongruence between the underlying moral values that shape solidaristic practices of individuals versus solidaristic arrangements that shape affordable housing opportunities. We suggest that housing rules and legislation that disrupt, rather than confirm, more-than-human solidarity may render older adults susceptible to, rather than protected from, deteriorating physical, mental and social well-being. We propose that collective solidaristic practices must reflect and subsume the moral complexity of solidarity practiced by individuals, to enable fair and equitable ageing-in-place. (shrink)

Despite an expansive literature on communication in medicine, the role of language is dealt with mostly indirectly. Recently, narrative medicine has emerged as a strategy to improve doctor-patient communication and integrate patient perspectives. However, even in this field which is predicated on language use, scholars have not specifically reflected on how language functions in medicine. In this theoretical paper, the authors consider how different models of language use, which have been proposed in the philosophical literature, might be applied to communication (...) in medicine. In particular, the authors contrast the traditional, indexical thesis of language with new models that focus on interpretation instead of standardization. The authors demonstrate how paying close attention to the role of language in medicine provides a philosophical foundation for supporting recent changes in doctor-patient communication. In particular, interpretive models are at the foundation of new approaches such as narrative medicine, that emphasize listening to patient stories, rather than merely collecting information. Ultimately, debates regarding the role of language which have largely resided in non-medical literatures, have important implications for describing communication in medicine. In particular, interpretive models of language use provide an important rationale for facilitating a more robust dialogue between doctors and patients. (shrink)

Running like a leitmotif through Peter Roberts’ recently published philosophico-educational writings there is a humanistic thread, which this article picks out. In order to ascertain the quality of this humanism, Roberts is positioned in relation to a pair of extant humanisms: radical and integral. Points of comparability and contrast are identified in several of the writer’s genre-crossing essays. These texts, it is argued, rectify deficiencies in how the two humanisms envision alternatives to capitalism. Roberts skilfully teases out the non-obvious futurological (...) implications of the work of a diverse array of authors, spanning the boundaries of philosophy, social criticism, and literature. In so doing, he underscores the intimate connection between personal self-transformation and ideal-driven social transformation. Further, Roberts challenges humanists of both radical and integral stripes to reconsider the moral grounds of their critique of capitalism. (shrink)

This article examines the storytelling aspect in philosophizing with rehabilitating cancer patients in small Socratic dialogue groups. Recounting an experience to illustrate a philosophical question chosen by the participants is the traditional point of departure for the dialogical exchange. However, narrating is much more than a beginning point or the skeletal framework of events and it deserves more scholarly attention than hitherto given. Storytelling pervades the whole Socratic process and impacts the conceptual analysis in a SDG. In this article we (...) show how the narrative aspect became a rich resource for the compassionate bond between participants and how their stories cultivated the abstract reflection in the group. In addition, the aim of the article is to reveal the different layers in the performance of storytelling, or of authoring experience. By picking, poking and dissecting an experience through a collaborative effort, most participants had their initial experience existentially refined and the chosen concept of which the experience served as an illustration transformed into a moral compass to be used in self-orientation post cancer. (shrink)

The narrative ethicist imagines life as multiple points of view, each reflecting a distinct imagination and each more or less capable of comprehending other points of view and how they imagine. Each point of view is constantly being acted out and then modified in response to how others respond. People generally have good intentions, but they get stuck realizing those intentions. Stories stall when dialogue breaks down. People stop hearing others' stories, maybe because those others have quit telling their stories. (...) The narrative ethicist's job is to help people generate new imaginations that can restart dialogues. (shrink)

Engages and extends the feminist philosopher Lorraine Code's groundbreaking work on epistemology and ethics.

This in-depth qualitative study considered how women from two different generations came to understand birth in the context of their own experience but also in the milieu of other women’s stories. For the purposes of this thesis the birth story encompassed personal oral stories as well as media and other representations of contemporary childbirth, all of which had the potential to elicit emotional responses and generate meaning in the interlocutor. The research utilised a hermeneutic phenomenological approach underpinned by the philosophies (...) of Heidegger and Gadamer. This methodology allowed the significance of the experience of engaging with stories to be grasped, and in-depth insights into the meanings and lived experience for women of the phenomenon to be made. Twenty participants were purposively selected, recruited and interviewed. In phase one ten women who were expecting their first baby in 2013 were recruited in order to explore how they understood birth prior to the event and in the light of other women’s stories. Birth stories were revealed as one of many ‘voices’ offering ‘advice’ to women about birth. The women also talked about classes they had attended, books they had read, websites and online forums they had accessed, as well as television programmes and films they had watched. The conversations with the first cohort of women led to further questions about whether the information gleaned from media and virtual birth story mediums creates meaningful knowledge about birth for women. The second phase evolved from this thinking. In phase two interviews with an older cohort of women were undertaken to determine whether women from a different era were more able to translate knowledge into meaning. This was based on the belief that, for this generation of women, stories were mediated by personal contact and not though virtual technologies as in the previous generation of women. Phenomenological conversations with the participants took place in the iterative circle of reading, writing and thinking. This revealed the experience of ‘being-in-the-world’ of birth for the two generations of women and the way of communicating within that world. From a Heideggerian perspective, the birth story was constructed through ‘idle talk’ and took place across a variety of media accessed by women, as well as through face to face conversations. Five central and interrelated interpretive findings emerged. Firstly the stories the women engaged with, had a significant role to play in their understanding and expectations of birth. The ‘norm’ as portrayed in the stories circulating in 2013, for instance, was one which perpetuated what one participant described as the ‘drama of birth’. Secondly, the modern ‘landscape’ of birth created and perpetuated fear of childbirth for many of the women. The stories shared were lacking in detail about women’s lives, and did not necessarily help them to become ‘knowers’ and gain wisdom about birthing. Thirdly, the women birthing in the present day were overloaded with information amassed in an attempt to manage their anxieties about birth as well as to fit the role of the informed patient, and demonstrate their competency as mothers. Fourthly the cultural and spiritual significance of birth was not shared in the circulating stories in either generation. Finally, some of the birthing women felt secure in the ‘system’ of birth as constructed, portrayed and sustained in the stories widely circulated. The data revealed that the lifeworld of birth being sustained in stories was one of product and process, concentrating on the stages and progression of labour and the birth of a healthy baby as the only significant outcome. Taken as a whole this thesis revealed that the information gleaned from birth stories did not in fact create meaningful knowledge and understanding about birth for these women. The study is unique in that no other published research has explicitly identified the premise of the ‘modern birth story’ or the notion of ‘idle talk’ in relation to childbirth. Further no other study has considered the phenomenon of engaging with these types of stories whilst pregnant. This study reveals how engaging with the ‘modern birth story’ and the ‘idle talk’ of birth may influence women’s expectations and consequent experience of birth. (shrink)

The successful delivery of patient-centered care hinges on clinical affiliation for patients' personal needs and experiences. Narrative competence is a mode of thinking and set of actions that widens the clinical gaze beyond logico-scientific cognition. In this article, we investigate a tool that enables clinicians to rehearse their skills in narrative competence. We apply the narrative competence framework developed by the founding practitioners of narrative medicine to personal accounts of illness and patienthood published on the Internet. We describe our use (...) of the five-point framework in the close reading of 214 accounts by people with the life-threatening skin cancer melanoma. (shrink)

Taking inspiration from the film Wit (2001), adapted from Margaret Edson’s (1999) Pulitzer Prize-winning play, this article explores the particularities of witnessing a cinematic cancer narrative juxtaposed with the author’s own cancer narrative. The analysis reveals the tenuous line between death and dying, illness and wellness, life and living and the resulting identities shaped in the process of understanding both from a personal and professional lens. By framing these representations of illness experience within the narrative constructions of drama, time, metaphor (...) and morality, the personal stories of intellectual knowledge converging with intimate and embodied knowing are revealed. (shrink)

The number of people who survive critical illness is increasing. In parallel, a growing body of literature reveals a broad range of side-effects following intensive care treatment. Today, more attention is needed to improve the quality of survival. Based on nine individual stories of illness experiences given by participants in two focus groups and one individual interview, this paper elaborates how former critically ill patients craft and recraft their personal stories throughout their illness trajectory. The analysis was conducted from a (...) phenomenological perspective and led to the meaning structure; a quest to find oneself after critical illness. In this structure, illness represented a breakdown of the participants’ lives, forcing them to develop a new understanding of themselves. Despite acute illness, they felt safe in hospital. Coming home, however, meant a constant balancing between health and illness, and being either in or out of control. To gain a deeper understanding of the participants’ narratives of survival, the meaning structure was developed from a phenomenological life world perspective, Heidegger’s concept of homelikeness and Arthur Frank’s typologies of illness narratives. In conclusion listening to and acknowledging the patients’ lived experiences of critical illness may support the patient efforts to establish the newly defined self and hence be vital for recovery. Phenomenology is one approach facilitating care tailored to the patients’ lived experience of critical illness and its aftermaths. (shrink)

Based in narrative phenomenology, this article describes an example of how lived time, self and bodily engagement with the social world intertwine, and how our sense of self develops. We explore this through the life story of a woman who lost weight through surgery in the 1970 s and has fought against her own body, food and eating ever since. Our narrative analysis of interviews, reflective notes and email correspondence disentangled two storylines illuminating paradoxes within this long-term weight loss process.Thea’s (...) Medical Weight Narrative: From Severely Obese Child to Healthy Adultis her story in context of medicine and obesity treatment and expresses success and control.Thea’s Story: The Narrative of Fighting Weightis the experiential story, including concrete examples and quotes, highlighting bodily struggles and the inescapable ambiguity of being and having one’s body. The two storylines coexist and illuminate paradoxes within the weight loss surgery narrative, connected to meaningful life events and experiences, eating practices and relationships with important others. Surgery was experienced as lifesaving, yet the surgical transformation did not suffice, because it did not influence appetite or, desire for food in the long run. In the medical narrative of transforming the body by repair, a problematic relationship with food did not fit into the plot. (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)

Online communities, created and sustained by people sharing and discussing texts on the internet, play an increasingly important role in social health movements. In this essay, we explore a collective mobilization in miniature through an in-depth analysis of two satiric texts from an online community for people with myalgic encephalomyelitis (ME). By blending a sociological analysis with a rhetorical exploration of these texts, our aim is to grasp the discursive generation of a social movement online community set up by sufferers (...) themselves to negotiate and contest the dominating biomedical perception of their condition. (shrink)

This essay applies Henri Lefebvre’s notion of the production of space, particularly his conceptualization of the tension formed by the perceived-conceived-lived triad to analyze how space is produced in wartime hospitals as demonstrated in Richard Selzer’s “The Whistlers’ Room.” Wounded soldiers participate in producing the triad of the social space of military hospitals through their multilayered performances as fighting soldiers serving the nation and as living human beings longing for human connections. Contradictory performances demonstrate the strategic positioning of wounded soldiers (...) as active producers of different social spaces. By representing the lived spaces produced by wounded soldiers, Selzer challenges the hegemonic representations of the conceived spaces of military hospitals. Selzer’s exploration of soldiers’ contradictory performances opens up opportunities for discussion of writing physicians who assume a similar role by positioning themselves strategically within the medical institution. (shrink)

Background: While being prepared for abortions, some women experience decisional ambivalence during their encounters with health personnel at the hospital. Women’s experiences with these encounters have rarely been examined. Objective: The objective of this study was to explore ambivalent abortion-seeking women’s experiences of their encounters with health personnel. Research design: The data were collected in individual interviews and analysed with dialogical narrative analyses. Participants and research context: A total of 13 women (aged 18–36 years), who were uncertain of whether to (...) terminate their pregnancies during the first trimester, were interviewed before and after they made their decisions. The participants were recruited at six Norwegian outpatient clinics. Ethical considerations: Approval was granted by the Regional Committee for Medical and Health Research Ethics. Findings: The ambivalent pregnant women sought to make autonomous decisions while simultaneously involving their closest confidants and health personnel in the process. The following three types of narratives of women’s experiences with encounters with health personnel were identified: the respected women; the identified women; and the abandoned women. Discussion: The findings are discussed in terms of the ambivalent pregnant woman’s autonomous responsibility in considering an abortion and how her autonomy can be enabled or impaired during encounters with health personnel. Conclusion and implication: Although the women considered themselves autonomous and responsible for their final decisions, they wished health personnel were involved in their situations. The health personnel contributed by enabling or disabling the possibility of decision-making in accordance with the women’s values. The findings indicate that health personnel who care for women considering abortions must be trained in dialogical competence. (shrink)

This study focuses on influence that older adults, living in nursing homes, have over everyday activities. Everyday activities are key to sustain a sense of stability, predictability, and enjoyment in the local world of people's everyday and therefore a critical dimension of the person‐centeredness framework applied within gerontology. This narrative ethnographic study aimed to shed light on how influence can be situated contextually, and how it can emerge through activities as well as how it is negotiated in everyday by frail (...) older adults living in a nursing home. Residents, staff members, and significant others from one nursing home in an urban area of Sweden participated in this study. Data were gathered through fieldwork, including participant observation and formal and informal conversations during a period of 6 months. Data were analyzed through a narrative interpretative approach. The findings are presented in narrative form as exemplars. The exemplars—Craquelures as justification, Seeking a place for other life worlds and An almost perfect trip—reveal a gap between the client‐centeredness framework and lived experiences regarding older adults’ influence in everyday activities. The role of everyday activities in the context of frailty is discussed in terms of ethical and responsive engagement, and implications for health‐care practices are considered. (shrink)

Many of those teaching at the intersection of medicine and the humanities are siloed within institutional spaces. This essay recounts the teaching of Sarah Manguso’s The Two Kinds of Decay to students across different academic contexts and considers what we can learn when we put classrooms in conversation with each other. This essay argues for the value of texts like Manguso’s, which explicitly hold the narrating subject and form of illness narrative up for critical examination. The authors call for more (...) collaborative teaching, which has special resonance in the health humanities, where conversations already depend on bridging disciplines and listening to the stories others can tell. (shrink)

This paper investigates the relationship between the experiences of mass vaccinations against two pandemic viruses: the swine flu in 2009–2010 and COVID-19 in the early 2020s. We show how distressing memories from the swine flu vaccination, which led to the rare but severe adverse effect of narcolepsy in approximately 500 children in Sweden, were triggered by the COVID-19 pandemic. The narcolepsy illness story has rarely been told in academic contexts; therefore, we will provide space for this story. It is presented (...) through a dialogue with the aim of shedding light on the interrelationship between pandemics—and between mass vaccinations—to investigate what could be termed cultural wounds that influence societies because they are characterized by the difficulty of talking about them. The paper explores the multiple shocks of illness in life and what can be learned from them by sharing them. (shrink)

Despite an expansive literature on communication in medicine, the role of language is dealt with mostly indirectly. Recently, narrative medicine has emerged as a strategy to improve doctor-patient communication and integrate patient perspectives. However, even in this field which is predicated on language use, scholars have not specifically reflected on how language functions in medicine. In this theoretical paper, the authors consider how different models of language use, which have been proposed in the philosophical literature, might be applied to communication (...) in medicine. In particular, the authors contrast the traditional, indexical thesis of language with new models that focus on interpretation instead of standardization. The authors demonstrate how paying close attention to the role of language in medicine provides a philosophical foundation for supporting recent changes in doctor-patient communication. In particular, interpretive models are at the foundation of new approaches such as narrative medicine, that emphasize listening to patient stories, rather than merely collecting information. Ultimately, debates regarding the role of language which have largely resided in non-medical literatures, have important implications for describing communication in medicine. In particular, interpretive models of language use provide an important rationale for facilitating a more robust dialogue between doctors and patients. (shrink)

North American writer Joan Didion’s eloquent testimonial speaks to the significance of storytelling in our lives. Personal storiesmake our lives meaningful. Part of this is because our stories, wittingly or not, become the means through which we fashion our identities for listeners. Or, as scholars from many disciplines have argued, identity and selfhoodare narrative accomplishments. In this formulation, an individual constructs a sense of self by telling stories or “personal narratives,” which describe “the evolution of an individual life over time (...) and in social context” (Maynes et al. in Telling stories: the use of personal narratives in the social sciences and in history. Cornell University Press, Ithaca, 2008, 2). While personal narratives contain unique autobiographical elements, the logics of storytelling and the values and beliefs of a particular time and place also influence the kinds of stories people tell. As feminist historian Mary Jo Maynes and her coauthors argue: “The stories that people tell about their lives are never simply individual, but are told in historically specific times and settings and draw on the rules and models in circulation that govern how story elements link together in narrative logics” (2008, 2). Put another way, even the most idiosyncratic story is always in some way social: what narrators decide to tell is often guided by the expectations of audiences (real or imagined); the conventions of various genres (such as life history or autobiography); as well as the broader cultural narratives located in particular historical times and places. In this light, personal narratives at once provide evidence of a storyteller’s viewpoint and experiences as well as the social and cultural milieu in which they live. (shrink)

A diagnosis of glioblastoma multiforme, a World Health Organisation grade IV brain tumour, is devastating for patients and their families who bear the impetus of caregiving. GBM caregivers act as de facto health professionals when their loved ones are discharged prematurely from hospitals. Faced with complex healthcare needs, GBM caregivers report the highest psychological burden, and highest unmet needs of all cancer caregivers. Despite this, they rarely accessed rehabilitation services. Researchers hardly engaged with their stories. The current research on GBM (...) caregiving is predominantly from a biomedical perspective, not only offering limited understandings of psychosocial experiences, but also, evidencing the need for caregiver stories in caregiving research. The researcher recruited 7 bereaved caregivers, who had previously narrated stories online about caring for their loved ones diagnosed with GBM and; consented to the use of their stories as research data. These stories covered a period of between 1-3+ years, throughout the illness trajectory and post-bereavement. The researcher further conducted email interviews focussed on the retrospective perspectives of sharing stories online. Participants provided feedback on the preliminary findings of the DNA. The findings consisted of multiple layers of interpretations drawn from social constructionism, narrative and feminist relational theories, beginning with subjective stories, collective story typologies and core narratives, thereby illuminating the relationships between GBM caregivers, the stories they narrated and the event of narrating stories online. An additional layer of interpretation served to shed light on the relational, dialogical, performative and hindsight perspectives of storytelling and the storytelling landscape. This research decentres the dominance of biomedicine in caregiving research to present a perspective from GBM caregivers using their own stories, in their own voices, so as to inform counselling psychology research and practice. (shrink)