Touching moments: phenomenological sociology and the haptic dimension in the lived experience of motor neurone disease

2014 ◽  
Vol 36 (6) ◽  
pp. 793-806 ◽  
Author(s):  
Jacquelyn Allen-Collinson ◽  
Amanda Pavey
Keyword(s):  
Lived Experience ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Phenomenological Sociology

Factors to consider for motor neurone disease carer intervention research: A narrative literature review

2016 ◽  
Vol 15 (5) ◽  
pp. 600-608 ◽  
Author(s):  
Cathy Gluyas ◽  
Susan Mathers ◽  
Nicole Hennessy Anderson ◽  
Anna Ugalde
Keyword(s):  
Social Support ◽  
Lived Experience ◽  
Psychosocial Intervention ◽  
Emotional Health ◽  
Intervention Research ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Factors Affecting ◽  
Narrative Literature Review ◽  
Relationship Factors

ABSTRACTObjective:The experience of caregiving in the context of motor neurone disease (MND) is extremely challenging. Over the past 15 years, quantitative and qualitative studies have delineated the psychosocial aspects of this experience, exploring its impact on caregivers' quality of life, rates of depression, distress, anxiety, and burden. Our paper aimed to provide an overview of the lived experience of MND caregivers, identifying the variables that can influence MND caregiver functioning that are relevant to the development of an intervention.Method:A narrative review was conducted, synthesizing the findings of literature retrieved from 2000 to early 2016.Results:A total of 37 articles were included in the review. The articles varied considerably in terms of methodology and quality. The main influential aspects reported and identified were factors pertaining to the patient, factors intrinsic to the caregiver, relationship factors, and social support factors.Significance of Results:There is evidence to support the fact that caregivers have poorer outcomes when they care for patients with a more severe clinical profile, poorer emotional health or neurobehavioral concerns, or when the caregivers themselves struggle with adaptive problem-solving and coping skills. The availability and use of social support are also likely to be important for caregiver psychosocial outcomes. Further investigation is required to clarify the influence of changes in the relationship with the patient. Significant factors affecting the caregiver experience are considered in relation to their amenability to psychosocial intervention. Recommendations are made regarding the optimal features of future psychosocial intervention research.

scholarly journals The Lived Experience of Diagnosis Delivery in Motor Neurone Disease: A Sociological-Phenomenological Study

2013 ◽  
Vol 18 (2) ◽  
pp. 36-47 ◽  
Author(s):  
Amanda Pavey ◽  
Jacquelyn Allen-Collinson ◽  
Toby Pavey
Keyword(s):  
Lived Experience ◽  
Health Professionals ◽  
Professional Training ◽  
Phenomenological Study ◽  
Mode Of Delivery ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Sociological Study ◽  
Qualitative Approaches ◽  
Phenomenological Perspective

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. In general, doctor-patient communication both at pre and post diagnosis was experienced as highly stressful, distressing and profoundly upsetting. Participants reported such distress as being due to the mode of delivery and communication strategies used by health professionals. We therefore suggest that professional training needs to emphasize the importance to health professionals of fostering greater levels of tact, sensitivity and empathy towards patients diagnosed with devastating, life-limiting illnesses such as MND.

scholarly journals The Lived Temporalities of Prognosis

2021 ◽  
Vol 39 (2) ◽  
pp. 138-155
Author(s):  
Dikaios Sakellariou ◽  
Nina Nissen ◽  
Narelle Warren
Keyword(s):  
Lived Experience ◽  
Early Death ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
The Future ◽  
To Come ◽  
Over Time ◽  
Do So

In this article, we explore the ways in which a man with motor neurone disease, Gareth, and his wife and carer, Maggie, enact different temporal orientations, when the expected future, an early death, does not arrive. We attend to the tensions between everyday priorities and uncertain futures to discuss the ways Gareth and Maggie negotiate action to deal with problems that are yet to come, but, despite this, already matter. We argue that prognosis thrusts people towards multiple presents and futures; while the future is fixed in time through prognosis and repaired through present action, it is also unfixed as lived experience unfolds over time. What emerges is a dialogue between multiple futures, pre-determined and uncertain, and practices that aim to repair the future, even if they cannot do so.

Occupational Exposure to Electric Shocks and Extremely Low-Frequency Magnetic Fields and Motor Neurone Disease

2020 ◽  
Author(s):  
Grace X Chen ◽  
Andrea’t Mannetje ◽  
Jeroen Douwes ◽  
Leonard H Berg ◽  
Neil Pearce ◽  
...  
Keyword(s):  
Occupational Exposure ◽  
Magnetic Fields ◽  
Low Frequency ◽  
Population Based ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Cumulative Exposure ◽  
Spine Injury ◽  
Extremely Low Frequency ◽  
Electric Shocks

Abstract In a New Zealand population-based case-control study we assessed associations with occupational exposure to electric shocks, extremely low-frequency magnetic fields (ELF-MF) and motor neurone disease using job-exposure matrices to assess exposure. Participants were recruited between 2013 and 2016. Associations with ever/never, duration, and cumulative exposure were assessed using logistic regression adjusted for age, sex, ethnicity, socioeconomic status, education, smoking, alcohol consumption, sports, head or spine injury and solvents, and mutually adjusted for the other exposure. All analyses were repeated stratified by sex. An elevated risk was observed for having ever worked in a job with potential for electric shocks (odds ratio (OR)=1.35, 95% confidence interval (CI): 0.98, 1.86), with the strongest association for the highest level of exposure (OR=2.01, 95%CI: 1.31, 3.09). Analysis by duration suggested a non-linear association: risk was increased for both short-duration (<3 years) (OR= 4.69, 95%CI: 2.25, 9.77) and long-duration in a job with high level of electric shock exposure (>24 years; OR=1.88; 95%CI: 1.05, 3.36), with less pronounced associations for intermediate durations. No association with ELF-MF was found. Our findings provide support for an association between occupational exposure to electric shocks and motor neurone disease but did not show associations with exposure to work-related ELF-MF.

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