Katharine Weetman

Background In 2019, an International Working Group on the Assessment of Professionalism (IWGAP) identified a lack of patient voice in the literature relating to assessment of professionalism. This study sought to gather public perspectives on professionalism and associated methods for assessment. Methods A mixed-method study was conducted to understand public perceptions of healthcare student professionalism and how these perceptions might inform future assessment practices. One hundred street surveys with members of the public were analysed and results were used as stimuli during two focus groups with simulated patients (SPs). Focus-group data were analysed in an iterative process to identify themes. Results While 97% of survey respondents were in favour of assessing professionalism for undergraduate healthcare students, preferences for formal or informal assessments varied. ‘Benevolence’ and ‘competence’ were considered key components of professionalism, with ‘Showing respect for patients and colleagues’ ranked as the most important aspect. Seven focus-group themes were identified: presentation, attitudes and values, patient relationship and centredness, trustworthiness, timekeeping, knowledge, and formality and mode of assessment. Conclusions While the public recognises the need to assess professionalism, healthcare programmes should re-assess the focus of examinations, which might prioritise aspects of professionalism deemed less important by patients.

Objectives: Prognostic uncertainty is common in advanced illness, driven by multimorbidity, treatment complexities and unpredictable disease trajectories. When inadequately acknowledged or discussed, it can lead to patient and family distress and inhibit decision-making. We aimed to build a programme theory of how, why and for whom communication of prognostic uncertainty ‘works’ (or not) in advanced illness and palliative care contexts. Design: Realist systematic review, reported according to RAMESES criteria. Data sources: Embase, MEDLINE, CINAHL, Cochrane Database of Systematic Reviews, SCI via Web of Science, PsycINFO, SSCI and multiple grey literature sources. We included evidence examining communication of prognostic uncertainty in adults with advanced illnesses. Data extraction and synthesis: We coded papers qualitatively to identify Context–Mechanism–Outcome Configurations (CMOCs) relevant to prognostic uncertainty communication. Supported by clinical and lay stakeholder consultation, we refined these into a programme theory. Results: From 4634 search results, we included 205 studies with 46 579 participants across 11 countries. The final programme theory identified contexts of communication: socio-cultural norms and values, patient and family preferences, communication models and interventions, clinician uncertainty tolerance, training and experience. Mechanisms of communication were mediated by the care relationship, the timing and initiation of discussion, the content of communication and explicit versus implicit communication. Relevant outcomes were emotions, hope, distress, decision making and care planning. There was no single model of effective communication as this varied based on individual characteristics and preferences, but openness was usually viewed positively. Conclusion: This programme theory provides a new understanding of the contexts and mechanisms, such as explicitness of discussion, that support effective communication of prognostic uncertainty across advanced illness contexts to reduce distress and aid decision making. Sociocultural factors are important, but they have the most limited supporting evidence, especially in low- and middle-income countries. The model presented here may support professionals in individualised and compassionate communication of prognostic uncertainty

Introduction: Good communication is imperative to high-quality patient care, particularly for achieving positive outcomes in healthcare consultations. Evidence about communication in clinical consultations for people with motor neurone disease (MND) is limited, but the knowledge gap prevents possible improvements to communication skills that are unique to the challenges that people living with MND encounter. This research aims to better understand and improve communication experiences for patients with MND. Methods and analysis: A 24-month qualitative longitudinal study whereby data collection will explore 10–15 cases of persons living with MND. For each case, we will recruit one patient, one close person/carer and one healthcare professional for separate interviews alongside an observed clinical consultation. The patient will be interviewed three times at approximately 4–6-month intervals over 12 months to explore the changing experiences, communication challenges and impact on quality of life. Close persons and healthcare professionals will be interviewed once. Data will be analysed to draw out patterns within and between cases, incorporating thematic analysis, corpus linguistics and conversation analysis techniques. Ethics and dissemination: Ethical approval was granted by the Health Research Authority (ref: 26/WM/0026). A co-design workshop will develop a framework for an educational toolkit for healthcare professionals to improve communication skills with MND patients. Findings will be disseminated to the academic community, healthcare staff and the public to increase reach and impact (academic journals, seminars, conferences, newsletters, community groups and engagement events). We will make recommendations for improvements to policy and practice. Trial registration number: ISRCTN15571034 .

Background In 2019, an International Working Group on the Assessment of Professionalism (IWGAP) identified a lack of patient voice in the literature relating to assessment of professionalism. This study sought to gather public perspectives on professionalism and associated methods for assessment. Methods A mixed-method study was conducted to understand public perceptions of healthcare student professionalism and how these perceptions might inform future assessment practices. One hundred street surveys with members of the public were analysed and results were used as stimuli during two focus groups with simulated patients (SPs). Focus-group data were analysed in an iterative process to identify themes. Results While 97% of survey respondents were in favour of assessing professionalism for undergraduate healthcare students, preferences for formal or informal assessments varied. ‘Benevolence’ and ‘competence’ were considered key components of professionalism, with ‘Showing respect for patients and colleagues’ ranked as the most important aspect. Seven focus-group themes were identified: presentation, attitudes and values, patient relationship and centredness, trustworthiness, timekeeping, knowledge, and formality and mode of assessment. Conclusions While the public recognises the need to assess professionalism, healthcare programmes should re-assess the focus of examinations, which might prioritise aspects of professionalism deemed less important by patients.

Background: Patients who have received specialist intervention during periods of complex symptom and palliative care needs (e.g. pain crisis) may be discharged from specialist palliative care services to primary care. Despite such discharges being reasonably common, little is known about what happens during this process. We sought to explore patient, carer and healthcare professional experiences, identifying ways to improve this crucial and time-sensitive part of the healthcare journey. Methods: A qualitative interview study designed using an interpretive approach and reflexive thematic analysis methods. Sampling was purposive across six specialist palliative care sites (hospitals and hospices) and six general practices. Results: A total of 38 participants took part in interviews:15 patients, 8 carers and 15 primary care professionals. Two overarching key themes were developed. The first described the multiple ways that ‘discharge’ was understood depending on the setting and circumstances of the patient. The second explored what was associated with better or worse transitions to primary care. Discharge communications that were accurate and complete were described as effective whereby written information reinforced verbal instructions and acted as a reminder. Participant suggestions for improving these discharge communications included: incorporating the patient’s palliative care preferences (e.g. advanced directives); offering letters to patients and, where appropriate, carers; providing post-discharge follow-up and contact details; ensuring medication instructions are accessible to patients and carers. Conclusions: Current specialist palliative care discharge communications risk confusion, distress, and increased workload post-discharge. The study identified numerous suggestions professionals could take to improve this process. Trial registration: Registered in ISRCTN Registry on 29.12.2023 ref: ISRCTN18098027.

Research involving patients is often subject to demanding ethical review processes to protect research participants and prevent harm or fraud. While having a robust ethical approval process is necessary, in practice, within palliative care contexts, the ethical issues and challenges raised (eg, gatekeeping) can often be detrimental to the research and, ultimately, people in need of high-quality care. We draw on evidence from our own research and others to challenge one-time-suits-all approaches to ‘protect the vulnerable’ in research, which, we argue,makespeople in end-of-life contexts more vulnerable as their voices are at risk of being excluded.

Background: Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such needs have been controlled. Effective communication between services is central to co-ordination of care to avoid the potential consequences of unmet needs, fragmented care, and poor patient and family experience. Discharge communications are a key component of care transitions. However, little is known about the experiences of those primarily receiving these communications, to include patients’, carers’ and primary care healthcare professionals. This study aims to have a better understanding of how the discharge communications from specialist palliative care services to primary care are experienced by patients, carers, and healthcare professionals, and how these communications might be improved to support effective patient-centred care. Methods: This is a 15-month qualitative study. We will interview 30 adult patients and carers and 15 healthcare professionals (n = 45). We will seek a range of experiences of discharge communication by using a maximum variation approach to sampling, including purposively recruiting people from a range of demographic backgrounds from 4–6 specialist palliative care services (hospitals and hospices) as well as 5–7 general practices. Interview data will be analysed using a reflexive thematic approach and will involve input from the research and advisory team. Working with clinicians, commissioners, and PPI representatives we will co-produce a list of recommendations for discharge communication from specialist palliative care. Discussion: Data collection may be limited by the need to be sensitive to participants’ wellbeing needs. Study findings will be shared through academic publications and presentations. We will draft principles for how specialist palliative care clinicians can best communicate discharge with patients, carers, and primary care clinicians. These will be shared with clinicians, policy makers, commissioners, and PPI representatives and key stakeholders and organisations (e.g. Hospice UK) and on social media. Key outputs will be recommendations for a specialist palliative care discharge proforma. Trial registration: Registered in ISRCTN Registry on 29.12.2023 ref: ISRCTN18098027.

Background: The Clinical Communication Team at the University of Birmingham are undertaking an ambitious project where students across all healthcare programmes will interact within a single virtual healthcare community – ‘Wood Brooke’ – via simulation activities. The vertical nature of the programme means students can ‘follow’ the illness/life journeys of a series of families that they meet early in the course over a 3–4 year timeframe. Additionally, they can meet and interact with simulated healthcare professionals working in Wood Brooke’s virtual primary, community, and secondary care facilities. Wood Brooke is already well-established throughout our 4-year Pharmacy degree, being integrated into teaching and testing not just for communication, but linked to other clinical aspects of the Programme. We will share our model, and experiences, successes, and challenges. Methods: Recently Wood Brooke was adapted for Birmingham’s 3-year BNurs programme as a vertically integrated clinical communication/professionalisation strand. It is well documented that nursing students should be trained in patient-centred communication [1]. Students from Adult, Child, and Mental Health Nursing mix in the sessions for intra-professional learning and breadth of peer support and feedback. Sessions in Year 1 focus on cases relating to three families from Wood Brooke from patient and relative/carer perspectives. Year 2 builds on the simulation to consider intra and interprofessional colleague interactions in community-based and acute settings through telephone and face to face role play simulation. This builds on the 3 family cases introduced in the first year, introducing other members within the family. Year 3 is under development. Results: Feedback from learners about the Programme has been positive. This is not a research project so we will not be presenting ‘data’. A result in progress is rolling Wood Brooke out to other Programmes, including Medicine and Dentistry, as part of curriculum review. Discussion may focus on the potential benefits of healthcare students having shared visibility of patient narratives/experiences where that patient is accessing care under more than one service. Conclusion: Inclusivity and designing a ‘community’ reflective of the population has been central. The vertical development of patient narratives over several years enables adaption of the programme to meet new priorities and needs (including, e.g., shift to remote working for COVID-19, and evolving patient demographics). References 1. Gutiérrez-Puertas L, Márquez-Hernández VV, Gutiérrez-Puertas V, Granados-Gámez G, Aguilera-Manrique G. Educational interventions for nursing students to develop communication skills with patients: a systematic review. International journal of environmental research and public health. 2020;17(7):2241. Background: The Clinical Communication Team at the University of Birmingham are undertaking an ambitious project where students across all healthcare programmes will interact within a single virtual healthcare community – ‘Wood Brooke’ – via simulation activities. The vertical nature of the programme means students can ‘follow’ the illness/life journeys of a series of families that they meet early in the course over a 3–4 year timeframe. Additionally, they can meet and interact with simulated healthcare professionals working in Wood Brooke’s virtual primary, community, and secondary care facilities. Wood Brooke is already well-established throughout our 4-year Pharmacy degree, being integrated into teaching and testing not just for communication, but linked to other clinical aspects of the Programme. We will share our model, and experiences, successes, and challenges. Methods: Recently Wood Brooke was adapted for Birmingham’s 3-year BNurs programme as a vertically integrated clinical communication/professionalisation strand. It is well documented that nursing students should be trained in patient-centred communication [1]. Students from Adult, Child, and Mental Health Nursing mix in the sessions for intra-professional learning and breadth of peer support and feedback. Sessions in Year 1 focus on cases relating to three families from Wood Brooke from patient and relative/carer perspectives. Year 2 builds on the simulation to consider intra and interprofessional colleague interactions in community-based and acute settings through telephone and face to face role play simulation. This builds on the 3 family cases introduced in the first year, introducing other members within the family. Year 3 is under development. Results: Feedback from learners about the Programme has been positive. This is not a research project so we will not be presenting ‘data’. A result in progress is rolling Wood Brooke out to other Programmes, including Medicine and Dentistry, as part of curriculum review. Discussion may focus on the potential benefits of healthcare students having shared visibility of patient narratives/experiences where that patient is accessing care under more than one service. Conclusion: Inclusivity and designing a ‘community’ reflective of the population has been central. The vertical development of patient narratives over several years enables adaption of the programme to meet new priorities and needs (including, e.g., shift to remote working for COVID-19, and evolving patient demographics). References 1. Gutiérrez-Puertas L, Márquez-Hernández VV, Gutiérrez-Puertas V, Granados-Gámez G, Aguilera-Manrique G. Educational interventions for nursing students to develop communication skills with patients: a systematic review. International journal of environmental research and public health. 2020;17(7):2241.

Background: The provision of palliative care is increasing, with many people dying in community-based settings. It is essential that communication is effective if and when patients transition from hospice to community palliative care. Past research has indicated that communication issues are prevalent during hospital discharges, but little is known about hospice discharges. Methods: An explanatory sequential mixed methods study consisting of a retrospective review of hospice discharge letters, followed by hospice focus groups, to explore patterns in communication of palliative care needs of discharged patients and describe why these patients were being discharged. Discharge letters were extracted for key content information using a standardised form. Letters were then examined for language patterns using a linguistic methodology termed corpus linguistics. Thematic analysis was used to analyse the focus group transcripts. Findings were triangulated to develop an explanatory understanding of discharge communication from hospice care. Results: We sampled 250 discharge letters from five UK hospices whereby patients had been discharged to primary care. Twenty-five staff took part in focus groups. The main reasons for discharge extracted from the letters were symptoms “managed/resolved” (75.2%), and/or the “patient wishes to die/for care at home” (37.2%). Most patients had some form of physical needs documented on the letters (98.4%) but spiritual needs were rarely documented (2.4%). Psychological/emotional needs and social needs were documented in 46.4 and 35.6% of letters respectively. There was sometimes ambiguity in “who” will be following up “what” in the discharge letters, and whether described patients’ needs were resolved or ongoing for managing in the community setting. The extent to which patients received a copy of their discharge letter varied. Focus groups conveyed a lack of consensus on what constitutes “complexity” and “complex pain”. Conclusions: The content and structure of discharge letters varied between hospices, although generally focused on physical needs. Our study provides insights into patterns associated with those discharged from hospice, and how policy and guidance in this area may be improved, such as greater consistency of sharing letters with patients. A patient-centred set of hospice-specific discharge letter principles could help improve future practice.