The lived experience of diagnosis delivery in motor neurone disease: A sociological-phenomenological study

Pavey, Amanda, Allen-Collinson, Jacquelyn, & Pavey, Toby (2013) The lived experience of diagnosis delivery in motor neurone disease: A sociological-phenomenological study. Sociological Research Online, 18(2).

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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.

Impact and interest:

7 citations in Scopus
6 citations in Web of Science®
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ID Code: 92482
Item Type: Journal Article
Refereed: Yes
Keywords: Motor Neurone Disease (MND); Diagnosis Delivery; Sociological-Phenomenology; Lived Experience; Patient Perspective
DOI: 10.5153/sro.2927
ISSN: 1360-7804
Divisions: Current > QUT Faculties and Divisions > Faculty of Health
Current > Institutes > Institute of Health and Biomedical Innovation
Current > Schools > School of Exercise & Nutrition Sciences
Deposited On: 01 Feb 2016 05:10
Last Modified: 03 Feb 2016 04:23

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