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

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

Assessing student attitude toward Christianity in Church in Wales primary schools : does aided status make a difference?

As a consequence of the 1944 Education Act church schools were given the choice of opting for voluntary controlled status or for voluntary aided status. In voluntary aided status the Church had more control but carried greater costs. Within England and Wales this distinction is still maintained. This study measures the attitude toward Christianity of 4,581 year 4, 5 and 6 students (8- to 11-years of age) attending 87 Church in Wales primary schools, and compares the responses of 1,678 students attending controlled schools with the responses of 2,903 students attending aided schools. After controlling for sex, age and frequency of church attendance, voluntary aided status is associated with a more positive attitude toward Christianity. In other words, aided status does make a difference to the attitudinal dimension of students’ religiosity

Academic Functioning and Mental Health in Adolescence

The current study examines patterns of academic functioning and mental health in 184 middle school children and the relation of such patterns to their prior and subsequent functioning. Data were collected from children during their second, third, fourth, eighth, and ninth grade school years. Cluster analyses were used to delineate patterns of academic functioning and mental health during eighth grade. The authors examined the relation of these patterns to academic functioning and mental health 1 year later the transition to high school, and then examined the long-term developmental roots of the eighth grade patterns using data collected during elementary school years. Results indicated variegated patterns of academic and emotional functioning at eighth grade and stability in these patterns across the high school transition. Some long-term continuity was found among children showing uniformly positive or negative functioning at eighth grade. Studying child functioning across multiple domains and time periods is discussed.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/68127/2/10.1177_0743558499142002.pd

Improving the delivery of care for patients with diabetes through understanding optimised team work and organisation in primary care

Peer reviewedPublisher PD

‘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

Convenient and robust one-pot synthesis of symmetrical and unsymmetrical benzyl thioethers from benzyl halides using thiourea

A series of symmetrical and unsymmetrical benzyl thioethers have been synthesised using a one-pot reaction from benzyl halides and thiourea. This procedure avoids the isolation or handling of malodorous thiols and generates high yields of benzyl thioethers in excellent purity

Tunable Oscillations in the Purkinje Neuron

In this paper, we study the dynamics of slow oscillations in Purkinje neurons in vitro, and derive a strong association with a forced parametric oscillator model. We demonstrate the precise rhythmicity of the oscillations in Purkinje neurons, as well as a dynamic tunability of this oscillation using a photo-switchable compound. We show that this slow oscillation can be induced in every Purkinje neuron, having periods ranging between 10-25 seconds. Starting from a Hodgkin-Huxley model, we also demonstrate that this oscillation can be externally modulated, and that the neurons will return to their intrinsic firing frequency after the forced oscillation is concluded. These results signify an additional functional role of tunable oscillations within the cerebellum, as well as a dynamic control of a time scale in the brain in the range of seconds.Comment: 12 pages, 5 figure

PAX2 (paired box gene 2)

Review on PAX2 (paired box gene 2), with data on DNA, on the protein encoded, and where the gene is implicated