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

Abstract

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.

Keywords

• Breaking bad news
• Neurodegenerative conditions
• Motor neurone disease
• Multiple sclerosis
• Parkinson’s disease
• Huntington’s disease