The lived experience of diagnosis delivery in Motor Neurone Disease: a sociological-phenomenological study

Pavey, Amanda, Allen-Collinson, Jacquelyn and Pavey, Toby (2013) The lived experience of diagnosis delivery in Motor Neurone Disease: a sociological-phenomenological study. Sociological Research Online, 18 2: 11.1-11.12. doi:10.5153/sro.2927

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Author Pavey, Amanda
Allen-Collinson, Jacquelyn
Pavey, Toby
Title The lived experience of diagnosis delivery in Motor Neurone Disease: a sociological-phenomenological study
Journal name Sociological Research Online   Check publisher's open access policy
ISSN 1360-7804
Publication date 2013-05-31
Sub-type Article (original research)
DOI 10.5153/sro.2927
Open Access Status Not yet assessed
Volume 18
Issue 2
Start page 11.1
End page 11.12
Total pages 12
Place of publication Guildford, United Kingdom
Publisher University of Surrey
Language eng
Subject 3312 Sociology and Political Science
Formatted abstract
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.
Keyword Motor Neurone disease (MND)
Diagnosis delivery
Sociological-phenomenology
Lived experience
Patient perspective
Q-Index Code C1
Q-Index Status Confirmed Code
Institutional Status UQ

Document type: Journal Article
Sub-type: Article (original research)
Collections: Official 2014 Collection
School of Human Movement and Nutrition Sciences Publications
 
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Citation counts: TR Web of Science Citation Count  Cited 8 times in Thomson Reuters Web of Science Article | Citations
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Created: Tue, 24 Sep 2013, 19:56:26 EST by Toby Pavey on behalf of School of Human Movement and Nutrition Sciences