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

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.

Neurologists' current practice and perspectives on communicating the diagnosis of a motor neurodegenerative condition: a UK survey.

BACKGROUND: The 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. METHODS: We 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. RESULTS: Forty-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%). CONCLUSIONS: This 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.

Exploring socioeconomic inequities in access to palliative and end-of-life care in the UK: a narrative synthesis.

BACKGROUND: Efforts inequities in access to palliative and end-of-life care require comprehensive understanding about the extent of and reasons for inequities. Most research on this topic examines differences in receipt of care. There is a need, particularly in the UK, for theoretically driven research that considers both receipt of care and the wider factors influencing the relationship between socioeconomic position and access to palliative and end-of-life care. METHODS: This is a mixed studies narrative synthesis on socioeconomic position and access to palliative and end-of-life care in the UK. Study searches were conducted in databases AMED, Medline, Embase, CINAHL, SocIndex, and Academic Literature Search, as well as grey literature sources, in July 2020. The candidacy model of access, which describes access as a seven-stage negotiation between patients and providers, guided study searches and provided a theoretical lens through which data were synthesised. RESULTS: Searches retrieved 5303 studies (after de-duplication), 29 of which were included. The synthesis generated four overarching themes, within which concepts of candidacy were evident: identifying needs; taking action; local conditions; and receiving care. CONCLUSION: There is not a consistent or clear narrative regarding the relationship between socioeconomic position and receipt of palliative and end-of-life care in the UK. Attempts to address any inequities in access will require knowledge and action across many different areas. Key evidence gaps in the UK literature concern the relationship between socioeconomic position, organisational context, and assessing need for care.

'It's a double whammy': A qualitative study of illness uncertainty in individuals with Parkinson's disease in the context of COVID-19.

OBJECTIVES: The purpose of this study was to explore the experiences of individuals with Parkinson's through the theoretical lens of illness uncertainty during the first UK full lockdown period (March-June 2020) put in place due outbreak of the COVID-19 pandemic. METHODS: Individual semi-structured interviews were carried out via telephone in May 2020 with 10 individuals with Parkinson's (six men and four women) recruited from Parkinson's UK. Interviews were recorded and transcribed verbatim, and thematic analysis was adopted to analyse the resulting data. RESULTS: Four overarching themes emerged from the interview data: (1) COVID-19 amplifying existing fears and difficulties around the uncertainty of Parkinson's; (2) practical and psychological efforts to manage uncertainty; (3) benefit-finding as a way of acknowledging the positives of lockdown; (4) risk and future management in the context of uncertainty. DISCUSSION: Participants reported a range of implicit and explicit strategies to cope with the 'double whammy' of uncertainty caused by having Parkinson's during a global pandemic. While these were generally successful in maintaining well-being, it is important that such successful accounts are used to help inform novel strategies and interventions targeting individuals who might need additional support.

Healthcare professionals' involvement in breaking bad news to newly diagnosed patients with motor neurodegenerative conditions: a qualitative study.

PURPOSE: Research on breaking bad news (BBN) in healthcare has mostly focused on the doctor-patient interaction during a single consultation. However, it has been increasingly recognised that BBN is a wider process that also involves other healthcare professionals. This qualitative study explored non-medical1 healthcare professionals' involvement in BBN to newly diagnosed patients with motor neurodegenerative conditions in the UK. MATERIALS AND METHODS: 19 healthcare professionals working with people with motor neurone disease, multiple sclerosis, Parkinson's disease or Huntington's disease took part in individual, semi-structured interviews which were analysed using thematic analysis. RESULTS: Four themes were constructed: dealing with the diagnostic aftermath, unpacking the diagnosis, breaking bad news as a balancing act and empowering patients to regain control over their health and lives. Participants reported being broadly involved in BBN by supporting patients with negative diagnostic experiences, re-iterating diagnostic information and helping patients understand the impact of their condition. The challenges of effectively breaking bad news and how these difficult conversations could help empower patients were also emphasised. CONCLUSIONS: BBN was a critical and challenging aspect of healthcare professionals' clinical work with newly diagnosed patients with motor neurodegenerative conditions. Besides providing information, BBN was perceived as a way to educate patients, encourage them to make decisions and prepare for the future.Implications for rehabilitationBreaking bad news is a potentially under-recognised but significant aspect in the neurorehabilitation of neurodegenerative conditions.Listening to patients' stories about a long and occasionally unsatisfactory diagnostic journey and allowing them to express their frustration can be critical in regaining patients' trust and building a relationship with them.Newly diagnosed patients have not always received adequate information about their condition at diagnosis or they might have not understood or retained that information. It is, therefore, essential that patients' understanding of their condition is assessed, misconceptions are cleared and appropriate information about the nature and impact of the diagnosis is provided.Irrespective of the length of experience, breaking bad news was perceived as a multi-faceted, challenging, stressful and emotionally demanding task.Formal support and specialised training on breaking the bad news that addresses the incurable, unpredictable and progressive nature of motor neurodegenerative conditions could help professionals with this challenging task.

Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors' and patients' perspectives.

OBJECTIVE: Delivering a life changing diagnosis can be a distressing experience for patients and a challenging task for professionals. Diagnosis delivery can be especially difficult for individuals with neurodegenerative diseases such as motor neurone disease (MND), multiple sclerosis (MS) and Parkinson's disease (PD). This review aims to scope the literature on doctors' and patients' perspectives on diagnosis delivery for these conditions in order to enhance our understanding in this area and identify potential research gaps. METHODS: A scoping review methodology was used, and data were summarised using content analysis. RESULTS: 47 studies fulfilled the inclusion criteria. Studies showed that although patients were generally satisfied with diagnosis delivery, a considerable proportion was still dissatisfied with aspects of the consultation, especially the information and time provided and the doctor's approach. Only six studies addressed doctors' perspectives, which focused more on doctors' practice. CONCLUSION: There was a significant research gap in professionals' perspectives. The review also found that although basic standards of good practice were being met, a significant proportion of patients were dissatisfied with diagnosis communication. PRACTICE IMPLICATIONS: Professionals delivering such diagnoses need to assess and respond to patients' information needs, provide time for questions and maintain an empathic attitude.