Investigating the role of healthcare in the construction of lay experience of physical disability : a multimethod qualitative study of people living with dystonia (original) (raw)
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(Re)imagining "Normal" Movement: Dystonia, the Chronic Illness Disrupting My Life
ABSTRACT This autoethnographic story is constructed around the skeleton of a play performed at the 2014 Doing Autoethnography conference. I delve into, and write through, the difficult experience of coming to terms with the chronic illness Dystonia. When readers absorb my explanation of how I have chosen to live my life, it becomes apparent that my attitude towards the illness is a departure from the expected “acceptance of disability.” I consider Dystonia to be a disruption to my life. I “acknowledge” Dystonia because it is some- thing that will forever be present; I will never “accept it.” I critically examine the notion of “normal,” and outline how my “normal” has changed. Throughout the article run reflections on my evolving “movement.” KEYWORDS Autoethnography; Dystonia; Olympian; Head injury; Emotional recovery
Journal of Evaluation in Clinical Practice, 2015
Last year saw the 20th anniversary edition of JECP, and in the introduction to the philosophy section of that landmark edition, we posed the question: apart from ethics, what is the role of philosophy 'at the bedside'? The purpose of this question was not to downplay the significance of ethics to clinical practice. Rather, we raised it as part of a broader argument to the effect that ethical questions-about what we should do in any given situation-are embedded within whole understandings of the situation, inseparable from our beliefs about what is the case (metaphysics), what it is that we feel we can claim to know (epistemology), as well as the meaning we ascribe to different aspects of the situation or to our perception of it. Philosophy concerns fundamental questions: it is a discipline requiring us to examine the underlying assumptions we bring with us to our thinking about practical problems. Traditional academic philosophers divide their discipline into distinct areas that typically include logic: questions about meaning, truth and validity; ontology: questions about the nature of reality, what exists; epistemology: concerning knowledge; and ethics: how we should live and practice, the nature of value. Any credible attempt to analyse clinical reasoning will require us to think carefully about these types of question and the relationships between them, as they influence our thinking about specific situations and problems. So, the answers to the question we posed, about the role of philosophy at the bedside, are numerous and diverse, and that diversity is illustrated in the contributions to this thematic edition. bs_bs_banner
International Journal of Current Research, 2018
Background: Progressive and involuntary in nature, X-linked Dystonia Parkinsonism (XDP) causes a great impact on the quality of life of the individuals affected. With all these changes involved in XDP, it necessitates the critical participation and support of caregivers in managing and coping with the disease. Published studies about XDP are mainly concerned with the experiences of individuals living with the disease, while the caregiver’s perspective is given less attention. Objective: This study aimed to explore the lived experience of primary caregivers in taking care of individuals diagnosed with XDP in Panay. Methods: A phenomenological research design was used as the strategy of inquiry to provide rich and thick description of the participants lived experience about the phenomenon. A semi-structured, face-to-face, in-depth interview was used to gather data among five purposively chosen participants. Interview transcripts were analyzed and interpreted using the method inspired by Colaizzi. Credibility, dependability, confirmability and transferability were adopted to maintain trustworthiness. Results: Six themes emerged: (1) overwhelming odds; (2) seal of care; (3) inescapable reality; (4) dancing under the storm; (5) finding one’s feet in; and (6) when hope springs. Conclusion: Primary caregivers of individuals with XDP are faced with increasing demands and challenges that are often overlooked. Understanding their experience is fundamental in designing interventions that highlights caring for the carers themselves.
Sociology of Health & Illness, 2022
Experiential knowledge is today increasingly valued in health-care practices, public health policies and health research and education programs. However, despite popular and institutional success, the concept remains loosely defined with the result of weakening its heuris- tic scope and paving the way for its commodification. In this article, we seek to provide a finer characteri- sation of patients’ experiential knowledge’s features and specificities through a critical narrative review of humanities and social science (HSS) literature published in English and French (1976–2021). Inspired by Jovchelovitch’s analysis of social knowledge, we seek to highlight the diversity and plurality of forms and articulations of knowledge that characterise expe- riential knowledge, as well as the gradual, dynamic and entangled process that leads from experience to knowl- edge and expertise. Our analysis points to the need for future research to adopt a resolutely pragmatic and situ- ated orientation in the study of experiential knowledge and the new figures of the contemporary patient that they help to create.
2014
Currently, there is a relative research lacuna in phenomenological research into the lived experience of motor neurone disease. Based on a sociological research project in the UK, involving 42 participants diagnosed with MND, this article explores the potential of a phenomenological sociology for analysing experiences of this drastically life-limiting neurological disorder. Calls have been made for sociological researchers to analyse more fully and deeply the sensory dimension of the lived body, and this article also contributes to this newly developing body of literature. While the social sciences have been accused of a high degree of ocularcentrism, here we take forward the literature by specifically focusing upon the haptic dimension, given that touch – and particularly the loss of key elements of the haptic dimension– emerged as salient in MND patients' accounts. To illustrate the potential of our phenomenologically inspired theoretical perspective, we consider two specific haptic themes: (i) being out of touch: the loss of certain forms of touch within MND and (ii) unwelcome touch by medical staff.
People living with disability or chronic illness often use practices of care to construct a version of life they are satisfied with. Drawing from a narrative-based study with people living with motor neuron disease, I show how one couple tried to be recognized as active agents in their life, while oscillating between positions of less and more power. Through an examination of the practices of care that the couple enacted, I illustrate how their positioning in relation to practices of care helped them create meaning in their life. In their efforts to create a way of living they were satisfied with they engaged in negotiations between varieties of subjectivity. Their subjectivity was not static, but was constructed as they shared power to carry out everyday self-care activities. The findings also underline the importance for healthcare practices of exploring the experiential knowledge of people living with MND.
Physiotherapy and Fundamental Ethics engages the field of physiotherapy through a critique of its contemporary foundations from the perspective of the ethics philosophy of Emmannuel Levinas, in order to develop novel approaches to physiotherapy practice. Physiotherapy is a well-established healthcare profession, practiced in healthcare systems around the world. Despite its success, modern healthcare more generally faces a number of significant challenges, including increasing financial burdens, an increasingly ageing and chronically ill population, ongoing technological innovation, and diminishing trust in conventional healthcare. Ways in which physiotherapy could respond to these challenges and adapt to future needs are being explored. One approach entails a thorough reassessment of the profession’s status quo and its subsequent development, drawing on hitherto unexamined philosophies, methodologies, and practices. This study seeks to contribute to these efforts by drawing on a range of traditions that have not yet been introduced to the profession, but appear to hold great potential for its critical reassessment and development. Levinas’s fundamental ethics provides the theoretical framework for this, beginning with its exposition of the ontological and epistemological underpinnings of Western metaphysics and science as implicating a violence against the other. This violence consists in negating the other and any relation to otherness through a totalizing movement, assimilating the other into the categories and capacities of the knowing ego, its knowledge, and self. Consonant with researchers who consider implications of Levinas’s work to other healthcare professions, I argue that Levinassian ethics reveals the theories and practices that shape contemporary physiotherapy as inadvertently opposing its original therapeutic motives and aspirations. By arguing that the other is characterised by a preceding and un-encompassable infinity and exteriority, Levinas developed his contrasting conceptions of fundamental ethics and the self-in-relation as otherwise than being. These provide the theoretical grounds on which I develop a novel understanding of the physiotherapist and physiotherapy practice. They are developed around the key notions of passivity and accompaniment drawn from Levinassian literature and further expanded throughout this thesis. Inasmuch as ethics as passivity and accompaniment questions the very possibility of practice without doing violence, I draw on Pierre Hadot’s approach to philosophy as a way of life, and the philosophies and practices of predominantly Japanese lineages of Zen(-buddhism), Aikido and other martial arts, and the treatment approach, Shiatsu. Building on their distinct emphases on physical practice and a resonance between them that I elucidate, I argue that they provide particularly fertile grounds for the development of otherwise physiotherapy practices. Autoethnography provides the methodological point of departure, as this study sets out from my personal involvements in physiotherapy and the Japanese philosophical, martial, and therapeutic traditions. Autoethnography was adapted in this thesis through a critical encounter with Levinas’s and Hadot’s work. This consolidated the contrasting and conjunctural encounter of physiotherapy with fundamental ethics and other philosophies and practices for physiotherapy’s critique and development. Through this methodological engagement with Levinas and Hadot, the research offers a novel development of autoethnography to the fields of qualitative research. Its broad reference-field further indicates contributions that inflect across these fields, including other healthcare professions underpinned by the same ontology and epistemology. The primary aims of this study remain the development of a critical perspective that expands on Levinas’s fundamental ethics, and the development of novel approaches to physiotherapy on this basis.
Knowledge, evidence, expertise? The epistemics of experience in contemporary healthcare
Evidence & Policy, 2020
This paper explores how personal experience acquires the status of knowledge and/or evidence in contemporary healthcare contexts that emphasise being both patient-centred and evidence-based. Drawing on a comparative analysis of three case studies – self-help and mutual aid groups; online patient activism; and patient feedback in healthcare service delivery – we foreground: a) the role that different technologies and temporalities play in how experience is turned (or fails to be turned) into knowledge or evidence; b) the role that experts-of-experience, in addition to the more frequently referenced experts-by-experience, play in mediating how, when and why experience is turned into an epistemic resource; and finally, c) how the need to be ‘evidence-based’ remains a persistent, yet at times productive, challenge to how patient and user experiences are incorporated in contemporary healthcare policy and practice. Throughout the paper, we argue that it is necessary to look at both democr...
Currently, there is a research lacuna with regard to phenomenological research into the lived-experience of motor neurone disease (MND), a terminal, neurodegenerative disease where the motor neurons in the cortex, brainstem and spinal cord gradually diminish in number until lost entirely. Based on a 3-year research project undertaken in the UK and in Australia involving 42 participants clinically diagnosed with MND, the aim of the study was to explore from a sociological-phenomenological perspective participants’ in-depth accounts of their own lived-body experiences of this disease. Calls have been made for sociological researchers to examine and analyse more fully and deeply the sensory dimension of the lived body, and this paper contributes to this newly developing corpus. As the social sciences in general have been accused of a high degree of ocularcentrism, in the paper we focus upon the haptic dimension, given that touch – and particularly the loss of key elements of the haptic – emerged as salient in our MND participants’ accounts. We focus on three specific haptic themes that participants identified as important in their changed mode of being-in-the-world: (i) being out of touch; (ii) the loss of dexterity of touch; and (iii) unwelcome touch by medical staff.
Sociological Research Online, 2013
Relatively few previous studies of individuals receiving a diagnosis of Motor Neurone Disease within the UK health care system have employed qualitative approaches to examine the diagnostic journey from a patient perspective. A qualitative sociological study was undertaken, involving interviews with 42 participants diagnosed with MND, to provide insight into their experiences of undergoing testing and receiving a diagnosis. Adopting a sociological-phenomenological perspective, this article examines key themes that emerged from participant accounts surrounding the lived experience of the diagnostic journey. The key themes that emerged were: The diagnostic quest; living with uncertainty; hearing bad news; communication difficulties; and a reified body of medical interest.