Neurologists' lived experiences of communicating the diagnosis of a motor neurodegenerative condition: an interpretative phenomenological analysis

Anestis, Eleftherios ORCID logoORCID: https://orcid.org/0000-0001-7309-3883, Eccles, Fiona J. R., Fletcher, Ian and Simpson, Jane (2023) Neurologists' lived experiences of communicating the diagnosis of a motor neurodegenerative condition: an interpretative phenomenological analysis. BMC Neurology, 23 (1) , 178. ISSN 1471-2377 [Article] (doi:10.1186/s12883-023-03233-3)

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Abstract

BACKGROUND
Receiving the diagnosis of a motor neurodegenerative condition (MNDC) can be a life-changing experience. Although several studies of individuals' experiences have indicated dissatisfaction with aspects of how an MNDC diagnosis was communicated, few studies have addressed doctors' experiences of breaking bad news for these conditions, especially from a qualitative perspective. This study explored UK neurologists' lived experience of delivering an MNDC diagnosis.

METHODS
Interpretative phenomenological analysis was used as the overarching method. Eight consultant neurologists working with patients with MNDCs took part in individual, semi-structured interviews.

RESULTS
Two themes were constructed from the data: 'Meeting patients' emotional and information needs at diagnosis: a balancing act between disease, patient and organization-related factors', and 'Empathy makes the job harder: the emotional impact and uncovered vulnerabilities associated with breaking bad news'. Breaking the news of an MNDC diagnosis was challenging for participants, both in terms of achieving a patient-centred approach and in terms of dealing with their own emotions during the process.

CONCLUSIONS
Based on the study's findings an attempt to explain sub-optimal diagnostic experiences documented in patient studies was made and how organizational changes can support neurologists with this demanding clinical task was discussed.

Item Type: Article
Sustainable Development Goals:
Theme:
Keywords (uncontrolled): Breaking bad news, Neurodegenerative conditions, Motor neurone disease, Multiple sclerosis, Parkinson’s disease, Huntington’s disease, Doctor-patient communication, Interpretative phenomenological analysis
Research Areas: A. > School of Health and Education
Item ID: 38003
Notes on copyright: Copyright © Crown 2023
Open Access: This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Depositing User: Eleftherios Anestis
Date Deposited: 23 May 2023 09:54
Last Modified: 23 May 2023 09:54
URI: https://eprints.mdx.ac.uk/id/eprint/38003

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