Dataset Information

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

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.

SUBMITTER: Anestis E

PROVIDER: S-EPMC10155430 | biostudies-literature | 2023 May

REPOSITORIES: biostudies-literature

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Publications

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

Anestis Eleftherios E Eccles Fiona J R FJR Fletcher Ian I Simpson Jane J

BMC neurology 20230503 1

<h4>Background</h4>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.<h4>Methods</h4> ...[more]

PMID: 37138217

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Project description:BackgroundThe communication of a life-changing diagnosis can be a difficult task for doctors with potential long-term effects on patient outcomes. Although several studies have addressed the experiences of individuals with motor neurodegenerative diseases in receiving this diagnosis, a significant research gap exists regarding professionals' perspectives, especially in the UK. This study aimed to assess UK neurologists' current practice and perspectives on delivering the diagnosis of a motor neurodegenerative disease, explore different aspects of the process and detail the potential challenges professionals might face.MethodsWe conducted an anonymised online survey with 44 questions, grouped into four sections; basic demographic information, current practice, the experience of breaking bad news and education and training needs.ResultsForty-nine professionals completed the survey. Overall, participants seemed to meet the setting-related standards of good practice; however, they also acknowledged the difficulty of this aspect of their clinical work, with about half of participants (46.5%) reporting moderate levels of stress while breaking bad news. Patients' relatives were not always included in diagnostic consultations and participants were more reluctant to promote a sense of optimism to patients with poorer prognosis. Although professionals reported spending a mean of around 30-40 min for the communication of these diagnoses, a significant proportion of participants (21-39%) reported significantly shorter consultation times, highlighting organisational issues related to lack of capacity. Finally, the majority of participants (75.5%) reported not following any specific guidelines or protocols but indicated their interest in receiving further training in breaking bad news (78.5%).ConclusionsThis was the first UK survey to address neurologists' practice and experiences in communicating these diagnoses. Although meeting basic standards of good practice was reported by most professionals, we identified several areas of improvement. These included spending enough time to deliver the diagnosis appropriately, including patients' relatives as a standard, promoting a sense of hope and responding to professionals' training needs regarding breaking bad news.

Project description:IntroductionYoung adulthood is a period of prosperity and freshness characterized by developmental achievement, which can be inhibited by various diseases such as cancer. Typically considered a terminal disease, if diagnosed in young adulthood, cancer may trigger a tremendous psychosomatic shock. The nature of facing a recent cancer diagnosis affects the whole coping process. Addressing young adults' experiences at the confirmation point of cancer diagnosis will facilitate supporting them through the early recognition of probable problems in the future. Therefore, the present study aimed to analyse the lived experiences of young adults facing a recent cancer diagnosis.MethodsThis qualitative study adopted an interpretive phenomenology design. In this study, 12 patients (with an age range of 20-40) were selected using the purposive sampling method. Data collection was done through in-depth, semistructured interviews. The data were analysed following the method proposed by Diekelmann et al. FINDINGS: Three main themes and nine subthemes were extracted from the data: (1) spiritual detachment and then acceptance through spirituality in the form of denial and then forced acceptance, sense of guilt and spiritual help-seeking, and anger towards God and then humbleness, (2) the shock of facing an extraordinary life shaped by disturbed role-play and unusual lifestyle, (3) anticipatory anxiety concerning the sense of rejection, negative perspective towards future, inability to afford the costs and worries about the future of the family members.ConclusionThis was the first study providing significant insights into the experiences of young adults facing a recent cancer diagnosis. The diagnosis of cancer can shadow all aspects of young adults' lives. The findings of the present study empower healthcare professionals to provide newly diagnosed young adults with appropriate health services.Patient contributionsTo identify and recruit the participants, we explained the objectives of the present study to the unit managers either by phone or in person. The participants were approached and interviewed by three authors. Participation was voluntary and the participants received no financial contribution for their time.

Dataset Information

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

Background

Methods

Results

Conclusions

Publications

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

Similar Datasets

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