‘Experiential knowledge’ is increasingly recognised as an important influence on reproductive decision-making. ‘Experiential knowledge of disability’ in particular is a significant resource within prenatal testing/screening contexts, enabling prospective parents to imagine and appraise future lives affected by disability. However, the concept of ‘experiential knowledge’ has been widely critiqued for its idiosyncrasy, its permanent state of flux and its inferiority to knowledge. This paper explores some of these critiques through an analysis of the nature and uses of experiential knowledge within the (...) context of reproductive decision-making. Seventeen women with Spinal Muscular Atrophy or with SMA in their family living in the UK took part in two in-depth interviews: one in 2007-9 and the second in 2013-4. By comparing and contrasting these women’s accounts at two time points, the stark contrast between ‘lived experiences’ of SMA and the various way these experiences came to be transformed into, and presented as, ‘knowledge’ by and through reproductive decisions is demonstrated. Through so-doing, this paper highlights the contrasting- and sometimes competing- experiential frameworks for understanding SMA that emerge from this process across time and context. However, rather than presenting this as evidence of fallibility, this paper argues for a move away from the notion that ‘knowledge’ is an appropriate vessel with which to understand, capture and transfer the experiential. Rather, we need to consider how to value such insights in ways that harness their inherent strengths without leaving simultaneously leaving them vulnerable to the epistemological critiques attracted by the label of ‘knowledge’. (shrink)

Ethics consultation in institutions of the healthcare system has been given a standard form based on three pillars: education, the development of guidelines and concrete ethics consultation in case conferences. The spread of ethics committees, which perform these tasks on an organizational level, is a remarkable historic achievement. At the same time it cannot be denied that modern ethics consultation neglects relevant aspects of care ethics approaches. In our essay we present an “ethics of care” approach as well as an (...) empirical pilot project—“Ethics from the bottom up”—which organizes ethics consultation based on this focus. Findings and philosophy of the project will be discussed as far as relevant for ethics consultation in the healthcare system. (shrink)

The research presented in this work represents reflections in the light of Julia Kristeva's philosophy concerning empirical data drawn from research describing the everyday life of people dependent on ventilators. It also presents a qualitative and narrative methodological approach from a person‐centred perspective. Most research on home ventilator treatment is biomedical. There are a few published studies describing the situation of people living at home on a ventilator but no previous publications have used the thoughts in Kristeva's philosophy applied to (...) this topic from a caring science perspective. The paper also addresses what a life at home on a ventilator may be like and will hopefully add some new aspects to the discussion of philosophical issues in nursing and the very essence of care. Kristeva's philosophy embraces phenomena such as language, abjection, body, and love, allowing her writings to make a fruitful contribution to nursing philosophy in that they strengthen, expand, and deepen a caring perspective. Moreover, her writings about revolt having the power to create hope add an interesting aspect to the work of earlier philosophers and nursing theorists. (shrink)

It was in the course of one particular clinical encounter that I came to realize the power of narrative, especially for expressing clinically presented ethical matters. In Husserlian terms, the mode of evidence proper to the unique and the singular is the very indirection that is the genius of story-telling. Moreover, the clinical consultant is unavoidably changed by his or her clinical involvement. The individuals whose situation is at issue have their own stories that need telling. Clinical ethics is in (...) this sense a way of helping patients, families, and, yes, health providers to discover and give voice to those stories. In this way, clinical ethics is an evoking of meaning. Kierkegaard understood this well: Indirect communication is the language for the unique and the otherwise inexpressible. (shrink)

The problem of how to make the transition to a more environmentally and socially sustainable society poses questions about how such far-reaching social change can be brought about. In recent years, lifecourse transitions have been identified by a range of researchers as opportunities for policy and other actors to intervene to change how individuals use energy, taking advantage of such disruptive transitions to encourage individuals to be reflexive toward their lifestyles and how they use the technological infrastructures on which they (...) rely. Such identifications, however, employ narratives of voluntary change that take an overly optimistic view of how individuals experience lifecourse transitions and ignore effects of experiences of unresolved or unsuccessful transitions. Drawing on interview data from the Energy Biographies project at Cardiff University, we explore three case studies where the effects of such unresolved transitions are significant. Using the concept of liminal transition as developed by Victor Turner, we examine instances where “progressive” narratives of energy use reduction clash with other “narrative genres” used to make sense of change. Such clashes show how narratives that view lifecourse transitions as opportunities ignore the challenges that such transitions may pose to efforts to construct or sustain identities. (shrink)

The impact of domestic violence and abuse is far reaching not least in terms of both the immediate and longer term physical and mental wellbeing of those who have experienced abuse. DVA also exerts a considerable detrimental impact on the wider family including children. While professional perspectives of working with DVA survivors is increasingly well documented, there remains a paucity of accounts of encounters with healthcare services and/or healthcare professionals from survivors of DVA themselves. A central aim of this study (...) was the exploration of women’s experiences of healthcare encounters told purely as personal narrative rather than framed in more traditional research terms. The focus of this paper therefore is unedited personal stories of encounters with healthcare professionals. The position of narrative as research method and the presentation of narratives in this particular instance are also considered. (shrink)

This is a response to a short communication on our research presented in Solbrække et al. :89–103, 2017), which raises a series of serious allegations. Our article explored the rise of ‘the breast cancer gene’ as a field of medical, cultural and personal knowledge. We used the concept biological citizenship to elucidate representations of, and experiences with, hereditary breast cancer in a Norwegian context, addressing a research deficit. In our response to Møller and Hovig’s :239–242, 2018a) opinionated piece, we start (...) by questioning on which scientific grounds they base their knowledge claims and situate their criticism in a pre-determined positivist script, which exposes their incompetency when it comes to establishing a useful critique of our research. We tie this to an attitude of scientific supremacy, which reduces the complexity and specificity of different knowledges into a clichéd divide between ‘hard evidence’ and ‘fiction’—presented in a predictable narrative which seeks to establish research protagonists and antagonists. We elaborate on the rationale of our qualitative approach to analyzing and interpreting situated and mediated aspects of BRCA 1/2. We counter claims that our research does harm to patients. We refer to a medical scandal emerging from Norway where 21 women were wrongfully diagnosed and surgically treated for a mis-interpreted cancer gene mutation. In conclusion, we stand by the integrity of our research as reported in the original paper. Scientific supremacy and pre-scripted criticism impose considerable obstacles for the possibility of establishing interdisciplinary dialogue across knowledge paradigms in health care and medicine. We therefore urge readers to reflect on how we can establish and sustain ethically careful and truthful dialogue—without doing violence to epistemological differences—to protect and advance the interdisciplinarity that constitutes the journal’s scope. (shrink)

Through her stories and mine, my sister and I allow the outside world to see the ways in which we grapple with a critical health incident along her journey of living with lupus. Lupus is a chronic, autoimmune disease that is difficult to recognize and to diagnose. The ambiguous nature of the disease creates considerable confusion for the ill person as well as her support system. Using an illness narrative, I analyze a real life event linked to chronic illness, invisibility, (...) living loss, liminality and family—and more specifically, to social support within the sibling relationship. (shrink)

Even though it is not a methodology on the level of principlism or casuistry, narrative bioethics nonetheless contributes to and guides decision-making in the field of biomedical ethics. However, unlike other methodologies, the narrative approach lacks a set of specific patterns and formal rules for doing so. This deficiency leaves this approach more vulnerable to the influence of historical factors; in fact, the vital history of a person is made up of thousands of scenes, which one must select and group (...) under different norms. Yet the historicity of narrative does not destroy its normative value; rather, it gives rise to a confluence of stories that contradict one another on the basis of their practical consequences. This problem is less severe in traditional cultures, where some stories take precedence over others according to the normative value conferred through the supposed authority of their sources. But it manifests in an intense manner within current multicultural societies. It is imperative to find the thread that leads outside the labyrinth of subjectivity. This paper shows that the end of this thread lies, paradoxically, not in actions but in the subject-actors that perform them—specifically when such subjects are conceived as dramaturgical characters in narrative. (shrink)

This paper describes how body regimes are effectuated in the prevailing treatment strategy of physiotherapy. The process of self‐mastering in the context of sports‐related injuries is highlighted. Through a Foucauldian perspective on body regimes the aim is to shed light on the process of individualization and self‐mastery in rehabilitation. The treatment of illness in the physiotherapy clinic does not characterize the patient as sick, and exempt the patient from daily duties and expectations. The empirical data include 17 qualitative illness narratives (...) and several years of fieldwork observing patients with anterior cruciate ligament (ACL) injuries in a physiotherapy clinic. The study demonstrates how the expectation that the patients be active and self‐mastering permeates the total process of treatment. The individual responsibility for personal well‐being is a recurrent phenomenon in public health services in general, and specifically prominent in the rehabilitation of sports injuries. (shrink)

This narrative case study, created from several qualitative sources, portrays a young woman’s life experiences and an eight yearlong therapy process with Norwegian Psychomotor Physiotherapy. It is analyzed retrospectively from an analytical angle, where NPMP theory is expanded with Løgstrup’s phenomenology of sensation and Ricoeur’s narrative philosophy. Understanding Rita’s narrative through this window displayed some foundational phenomena in a singular way, illuminating embodied experiences in inter-subjective relationships in movement, sensation and time entwined. It illustrates how traumatic life experiences may cause (...) pain, suffering and ruptured narratives with fragmented physical and sensuous reactions, chaos and loss of temporal coherence with consequences for a person’s sense of identity. Rita’s narrative also illuminates how intersubjective interaction has healing potentials when there is time and space for trust to emerge and to support new bodily-based experiences. Embodied sensuous experiences in present time may help clarify past and present and support chronology in narration and the sense of identity. With this exemplary case study, we argue that Løgstrup’s and Ricoeur’s thinking may add valuable perspectives to understanding suffering and healing processes in the field of embodied therapies like NPMP. (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)

Montaigne’s writings on medicine and the body have always been seen as part of a larger project about knowing ourselves. Responding to medical developments that seemed to privilege the anatomical body over the mind or the emotions, Montaigne defended the humoral link between mind and body. His essays make use of word play, puns, and anecdotes based on his own experience and reports from antiquity to counter what he perceived to be an increasingly one-sided approach to medicine. The result is (...) a witty but nuanced argument for a more balanced outlook to what is now known as psychosomatic medicine. (shrink)

Collaborative memoirs by co-writers with and without autism can enable the productive interaction of the voices of the writers in ways that can empower rather than exploit the disabled subject. Carly's Voice, co-written by Arthur Fleischmann and his autistic daughter Carly, demonstrates the capacity for such life narratives to facilitate the relational interaction between writers in the negotiation of understandings of disability. Though the text begins by focusing on the limitations of life with autism, it develops into a collaboration which (...) helps both writers move toward new ways of understanding disability and their own and one another's life stories. (shrink)

Although philosophers often focus on the essays of Leopold's Sand County Almanac, especially "The Land Ethic," there is also a normative argument present in the stories that comprise most of the book. In fact the shack stories may be more persuasive, with a subtlety and complexity not available in his prose piece. This paper develops a narrative ethics methodology gleaned from rhetoric theory, and current interest in narrative ethics among literary theorists, in order to discern the normative underpinnings of the (...) stories in Part 1. The narrative ethics approach sidesteps the need to ground the land ethic in ethical theory—which has been a reconstructive and problematic task for the philosophical interpreters of Leopold—and suggests, instead, that it emerges in Leopold's very effort to narrate his, professional, personal, and practical experience with nature. The involves examining the stories in terms of their emotional, logical and performative aspects. The result is an analysis that shows not only how these stories express normative claims, but also justify them. One conclusion of the analyses is that, in the narratives, there is less emphasis on the problematic notion of an over-arching "community" than in the prose pieces, and more emphasis on the metaphor of other living things as "fellow travelers" in the "odyssey of evolution." Second, the narratives take on an ironic attitude toward the ecological order, less discernable in the prose essays. The order itself may not be ethically admirable, but should be preserved since it makes possible any ethical relations within it. Thus, the narrative reading suggests some temperance to the usual holistic interpretation of his land ethic and its concomitant criticisms especially the charge of ecofacism. We should not take the land ethic imperative at its face value, in the sense that the good of the order itself is an intrinsic good. In the narratives, individuals are shown not merely to be means to the ecological whole, but the focus of sympathy and concern, in a manner that demands their good should also be an object of moral consideration. (shrink)

Nursing on paper: therapeutic letters in nursing practice This paper offers a selected piece of interpretive research extracted from the context of a larger research study. The hermeneutic research inquiry described in this paper involved the examination of the nursing and family therapy intervention of therapeutic letters. It incorporated the textual interpretation of 11 therapeutic letters, clinical sessions with three families, clinical team discussions, and research interviews with four family members and three nurse clinicians who participated in the writing of (...) the letters. This particular paper extracts segments of the research related to the letters received by two participants, as well as some general findings, with a focus on the possibilities and influences of therapeutic letters in nursing practice. The findings of this research offer suggestions, not as a template, but as an inspiration and evocation to write therapeutic letters that address the obligation of meeting people experiencing illness at the point of their suffering, with words and questions that invite relationship, reflection, and are large enough to sustain a meeting. (shrink)

This article explores the way that senile dementia is represented in contemporary culture, with particular reference to texts which narrate the experience of caring for a parent or spouse with one form of the illness. These narratives raise problematic issues about the materiality of the body and its relation to individual identity, and the unstable relationship between memory and identity in postmodern culture, by drawing on the actual experience of bodily dependency and disorientating memory loss in dementia patients. These speculations (...) about the body, memory and the self are ultimately related in narratives of dementia to the inevitable process of aging and dying and the cultural meanings attached to it. The article places the representation of dementing illnesses within a Foucauldian narrative of surveillance and control in the discourse of aging and death in modern Western societies, redemptive views of illness in western culture and arguments about death in contemporary theory. (shrink)

This article offers a series of critical theorizations on the biopolitical dimensions of methicillin-resistant Staphylococcus aureus (MRSA), with specific attention to what has recently been referred to in the United States as the ‘MRSA Epidemic’. In particular, we reflect on the proliferation of biomedical discourses around the ‘spread’, and the pathogenic potentialities, of community-associated methicillin-resistant Staphylococcus aureus (CA-MRSA). We turn to the work of Roberto Esposito and Jean-Luc Nancy to better make sense of how, during this immunological crisis, the individualized (...) fleshy and fluid body is articulated to dimensions of community and corporeal proximity; the body is thus conceived in popular biopolitical framings as a site of transmission, inoculation, and isolation – as a living ecological and pathological vessel. We give emphasis to the spatial relations of flesh, namely in how biomedical ‘experts’ have sought to (bio-)technologize spaces of heightened communal bodily contact (such as playgrounds or gymnasia). (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)

Long-term cancer survivorship is an emerging field that focuses on physical late-effects and psychosocial implications for the inflicted. This study wishes to cast light on the underlying ontological aspect of long-term survivorship by philosophically exploring how being in life post cancer is perceived by survivors. Sixteen in-depth interviews with 14 Danish cancer survivors were conducted by the author. Having faced a life-threatening disease but no longer being in imminent danger of dying, survivors still considered death a defining yet dynamic component (...) in their approach to life as a moving toward the end, sparking a sense of vitality in mortality. In order to unfold the interviewees’ renewed existential understanding post cancer, this study employs Martin Heidegger’s ontological analysis of death. In survivorship, my participants can thus be understood as being left with the perpetual choice between living in inauthenticity or in authenticity. The difference between the two modes of existence exhibits two diverging ways of relating to death, self, and being-in-the-world. At the same time, the role of death in long-term survivorship reflects back on the magnitude of the initial existential and moral upheaval triggered by the cancer diagnosis. Understanding the role of death in long-term survivorship can positively inform the field of cancer rehabilitation and long-term survivor care. (shrink)

Norway provides total social welfare coverage for organ transplantations, including free immunosuppressive medication and prepaid life-long follow up for both recipients and donors. Despite these benefits the proportion of living kidney donors has in recent years declined from around 40% of all kidney transplantations to 24%. This study suggests harnessing patient- and donor-narratives as a tool for addressing the current fall in donation rates. The hospital records of 18 recipient/donor dyads were compared with patient and donor accounts elicited in semi-structured (...) interviews. Narratives afford a pertinent supplement to the primarily biomedical and technical information stored in medical records. Even in condensed form, the messages embedded in narratives contribute to a ‘thicker’ understanding of the complexity of living kidney donation -decisions. Narratives represent a source of education for referring-nephrologists wishing to deepen their evaluation skills and avoid making decisions based on insufficient insight into patients’ and potential donors’ values and life-situation. Recipients’ and donors’ unedited accounts of their motivations, worries, doubts and expectations afford a revealing and edifying supplement to the primarily biomedical and technical information stored in medical records. In narratives, the predicaments and dilemmas surrounding LKD become visible and debatable and can serve as support for future donors, recipients and the nephrologists responsible for evaluation–conclusions. Generating narratives raises a number of practical, epistemic and normative challenges. (shrink)

This study examines the processes ofdecision-making used by intensive care(critical care) specialists. Ninety-ninespecialists completed a questionnaire involvingthree clinical cases, using a novel methodologyinvestigating the role of uncertainty andtemporal-related factors, and exploring a rangeof ethical issues. Validation and triangulationof the results was done via a comparison studywith a medically lay, but highly informed groupof 37 law students. For both study groups,constructing reasons for a decision was largelyan interpretative and imaginative exercise thatwent beyond the data (as presented), commonlyresulting in different reasons supporting (...) thesame conclusions and similar reasons supportingopposite conclusions. The skills of ethicalimagination and interpretation were related toan individual''s prior lived experience,construed in the broadest sense. Application ofthese skills of ethical imagination andinterpretation always occurred, to some degree,in a state of uncertainty and almost alwaysinvolved temporal relationships.Using these results, a theory of ethicaldecision-making is proffered. Three levels ortypes of reasoning processes may be present.Type I decision-making involves the applicationof rules, usually in a deductive fashion. TypeII decision-making is characterised by aprocess where a plurality of reasons arebalanced, weighed and sifted with each other.Type III decision-making is intimately linkedwith respondents lived experiences and `crafts''the content of type I and II reasoningprocesses, via the application of ethicalimagination and interpretation. Relationshipsbetween these three types of reasoningprocesses, and with narrative ethics, are alsodiscussed. (shrink)

More official complaints about medical treatment in the UK relate to poor communications than to wrong diagnoses. This article, in considering the importance of communications training for clinicians, is structured into three sections. From use of a story that introduces the idea of miscommunication and trauma in the first section, the article moves, in the second, to a theorisation of trauma as a concept, addressing issues of intersubjectivity, the relationship between embodied and psychological being, and ethics. From this, the third (...) section engages directly with medical communications training, exemplifying a particular literary-studies approach to matters of communication. (shrink)

Illness narrative has often been found to play a positive role in both patients’ and providers’ efforts to find meaning in the illness experience. However, illness narrative can sometimes become counterproductive, even pathological, particularly in cases of medical mystery—cases wherein biopsychosocial factors blur the distinction between bodily dysfunction and somatizing behavior. In this article, the author draws attention to two examples of medical mystery, the clinical presentation of medically unexplained symptoms, and the popular reality television program Mystery Diagnosis, to demonstrate (...) the potentially harmful effects of illness narrative. The medical mystery’s complex narrative structure reflects and tends to reinforce providers’ and patients’ mistaken assumptions, anxieties, and conflicts in ways which obstruct, rather than facilitate, healing. (shrink)

Abstract.This paper responds to the Expert Patient initiative by questioning its over-reliance on instrumental forms of reasoning. It will be suggested that expertise of the patient suffering from chronic illness should not be exclusively seen in terms of a model of technical knowledge derived from the natural sciences, but should rather include an awareness of the hermeneutic skills that the patient needs in order to make sense of their illness and the impact that the illness has upon their sense of (...) self-identity. By appealing to MacIntyre’s concepts of “virtue” and “practice”, as well as Frank’s notion of the “wounded story-teller”, it will be argued that chronic illness can be constituted as a practice, by building a culture of honest and courageous story-telling about the experience of chronic suffering. The building of such a practice will renew the cultural resources available to the patient, the physician and the rest of the community in understanding illness and patient-hood. (shrink)

Victims of disaster suffer, not only at the very moment of the disaster, but also years after the disaster has taken place, they are still in an emotional journey. While many moral perspectives focus on the moment of the disaster itself, a lot of work is to be done years after the disaster. How do people go through their suffering and how can we take care of them? Research on human suffering after a major catastrophe, using an ethics of care (...) perspective, is scarce. People suffering from disasters are often called to be in distress and their emotional difficulties ‘medicalised’. This brings them often into a situation of long term use of medication, and one can wonder if medication is of help to them in the long run. In our paper, we will explore another moral perspective, focusing on the importance of the victims’ narrative and their lived experiences. We will use Paul Ricoeur’s phenomenological reflections from ‘Suffering is not the same as pain’ for conceptualizing human suffering and how to apply it to victims of disaster. Ricoeur suggests that suffering is not a quantity that can be measured, but a characteristic that should be studied qualitatively in interpersonal and narrative contexts. Above all, the perspective of care and listening could offer an opportunity to reconcile people from their loss and suffering. (shrink)

Intergenerational storytelling (IGS) has recently emerged as an arts- and humanities-focused approach to aging research. Despite growing appeal and applications, however, IGS methods, practices, and foundational concepts remain indistinct. In response to such heterogeneity, our objective was to comprehensively describe the state of IGS in aging research and assess the critical (e.g., conceptual, ethical, and social justice) issues raised by its current practice. Six databases (PsycINFO, MEDLINE, PubMed, Scopus, AgeLine, and Sociological Abstracts) were searched using search terms relating to _age_, (...) _intergenerational_, _story_, and _storytelling_. Peer-reviewed, English-language studies conducted with participants residing in non-clinical settings were included. One thousand one hundred six (1106) studies were initially retrieved; 70 underwent full review, and 26 fulfilled all inclusion criteria. Most studies characterized IGS as a practice involving older adults (> 50 years old) and conventionally-aged postsecondary/college students (17–19 years old). Typical methodologies included oral and, in more recent literature, digital storytelling. Critical issues included inconsistently reported participant data, vast variations in study design and methods, undefined key concepts, including _younger_ vs. _older_ cohorts, _generation_, _storytelling_, and whether IGS comprised an intentional _research method_ or a retrospective _outcome_. While IGS holds promise as an emerging field of arts- and humanities-based aging research, current limitations include a lack of shared data profiles and comparable study designs, limited cross-cultural representation, and insufficiently intersectional analysis of widespread IGS practices. To encourage more robust standards for future study design, data collection, and researcher reflexivity, we propose seven evidence-based recommendations for evolving IGS as a humanities-based approach to research in aging and intergenerational relations. (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)

There has been much work highlighting the benefits of autoethnographic research yet little acknowledgement of the demands researching your own life makes on the emotional and mental wellbeing of the researcher. This paper explores the consequences that can arise as a result of autoethnographic research by detailing the crises involved in researching a topic that the researcher has experienced herself. This paper discusses the re-emergence of my grief over the death of my mother as I researched into the experience of (...) other young women who had experienced the death of their mother during their youth. The research process was a journey in which crises were experienced that conflicted and illuminated the emerging findings of the research. The role of the researcher and the researcher’s subjectivity--emotions, feelings, actions--are highlighted as integral to research practice. Accepting vulnerability and problematic feelings and emotions can be seen both as an important part of grieving the loss of a mother but also a significant step in conducting research and being a researcher. (shrink)