Objective: Motor Neurone Disease (MND) is a rare, devastating neurodegenerative disease of middle/later life, usually presenting in the sixth and seventh decades (McDermot & Shaw, 2008). People have to wait many months to receive a diagnosis of MND (Donaghy et al., 2008), and during this period they have already experienced the degenerative nature that characterizes MND (Bolmsjö, 2001). However, information on the meaning of life with MND through time is limited. The aim of the present research was to answer the research question "What does it mean to be a person living through the illness trajectory of MND?" and to research the phenomenon of existence when given a diagnosis of MND and in the context of receiving healthcare.
Method: Hermeneutic phenomenology, inspired by the philosophers Heidegger and Gadamer, informed the methodological approach employed, which asked people to tell their story from when they first thought something untoward was happening to them. The hermeneutic analysis involved a five-stage process in order to understand (interpret) the lifeworld 1 of four people diagnosed with MND, and a lifeworld perspective helped to make sense of the meaning of existence when given a terminal diagnosis of MND.
Results: The concept of "existential loss" identified in relation to MND was the loss of past ways of being-in-the-world, and the loss of embodiment, spatiality, and the future.
Significance Of Results: The concept of existential loss requires closer attention by healthcare professionals from the time of diagnosis and on through the illness trajectory. The study findings are conceptualized into a framework, which when used as a clinical tool may prompt healthcare professionals to focus on their patients' existential loss and existential concerns. This research adds to the existing literature calling for a lifeworld approach to healthcare.
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http://dx.doi.org/10.1017/S1478951515000620 | DOI Listing |
Sociol Health Illn
January 2024
Department of Education, Practice and Society, Institute of Education, University College London, London, UK.
Identity loss and (re)construction forms a central debate in sociology of chronic illness. Living with chronic/persistent health conditions may raise questions about how disruptions can touch upon and further threaten the very roots of existence, by which people reflexively perceive a coherent and stable sense of 'being-in-the-world'. Whilst medical sociologists have shown interest in 'existential loss' in chronic illness, this question remains largely underexplored.
View Article and Find Full Text PDFPatient
February 2019
Cicely Saunders Institute, King's College London, London, UK.
Background: The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes.
Objective: This review aims to identify symptoms, concerns and outcomes that matter to children and young people ("young people") with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes.
Clinicians in community mental health settings frequently evaluate individuals suffering from physical health problems. How patients make meaning of such "comorbidity" can affect mental health in ways that may be influenced by cultural expectations and by the responses of clinicians, with implications for delivering culturally sensitive care. A sample of 30 adult mental health intakes exemplifying physical illness assessment was identified from a larger study of patient-provider communication.
View Article and Find Full Text PDFPalliat Support Care
December 2015
School of Health Sciences, University of Salford,Salford,England.
Objective: Motor Neurone Disease (MND) is a rare, devastating neurodegenerative disease of middle/later life, usually presenting in the sixth and seventh decades (McDermot & Shaw, 2008). People have to wait many months to receive a diagnosis of MND (Donaghy et al., 2008), and during this period they have already experienced the degenerative nature that characterizes MND (Bolmsjö, 2001).
View Article and Find Full Text PDFJ Psychosoc Oncol
February 2012
Department of Health, Exercise and Sport Sciences, Texas Tech University, Lubbock, USA.
Although a plethora of studies exist as to the efficacy of mindfulness-based interventions with cancer patients, existential, loss, and grief factors are absent. The primary purpose of this exploratory study was to add to the literature by exploring the pre-post effects of an 8-week mindfulness-based intervention on existential well-being, summed self-identified losses, and grief scores as well as assess mental adjustment to cancer; also, 6-month follow-up data as to intervention maintenance were obtained. Sixty-five women, all of whom had been diagnosed with breast cancer within the past 12 months, participated in this study.
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