Analysing the patient experience of COVID-19: Exploring patients' experiences of hospitalisation and their quality of life post discharge.

AIMS AND OBJECTIVES: We sought to gain an understanding of the patient experience during their hospital stay for COVID-19, and the impact of COVID-19 on quality of life post discharge. BACKGROUND: Symptoms of COVID-19 include a persistent cough, dyspnoea and fatigue. Individuals with comorbidities such as cardiovascular disease have a higher risk of contracting COVID-19 and approximately 20% of those diagnosed with COVID-19 are admitted to hospital. Following discharge from hospital, 40% of patients report a worsened quality of life and up to 87% of those discharged from hospital have experienced 'long COVID'. DESIGN: A qualitative design was used to understand patient experience of hospitalisation following a diagnosis of COVID-19, and their experiences following discharge from hospital. METHODS: Ten patients with a previous diagnosis of COVID-19 took part in semi-structured interviews regarding their experiences of hospitalisation and the impact on quality of life post-discharge. RESULTS: The results identified three key themes from the interviews: communication and the inpatient experience, symptoms following discharge and regaining independence. Patients discussed their experience of hospitalisation and how this continued to impact their emotional well-being post-discharge. However, patients appeared to push themselves physically to improve their health, despite continued COVID-19 symptoms. CONCLUSION: Patients hospitalised following a diagnosis of COVID-19 experienced psychological distress during their hospital stay, as well as 3-months post-discharge. We suggest the use of psychosocial interventions to support patients post-discharge. RELEVANCE TO CLINICAL PRACTICE: The results of this study provide a greater understanding of the patient experience during their hospital stay, which can support nursing staff practice. Additionally, the study provides in depth knowledge of personal experiences of patients diagnosed with COVID-19 and the impact following hospital discharge. PATIENT OR PUBLIC CONTRIBUTION: Patient's took part in semi-structured interviews via telephone to support the aims and objectives of this study.

Why are older adults living with the complexity of multiple long-term conditions, frailty and a recent deterioration in health under-served by research? A narrative synthesis review of the literature.

Older adults living with the complexity of multiple long-term conditions (MLTC), frailty and a recent deterioration in health are under-served by research. As a result, current treatment guidelines are often based on data from studies of younger and less frail participants, and often single disease focused. The aims of this review were (i) to identify why older adults living with the complexity of MLTC, frailty and a recent deterioration in health are under-served by research and (ii) to identify strategies for increasing their recruitment and retention. Although a range of factors have been suggested to affect the participation of older adults with MLTC and frailty in research, this review shows that much less is known about the inclusion of older adults living with the complexity of MLTC, frailty and a recent deterioration in health. Researchers should focus on strategies that minimise participation burden for these patients, maintaining an adaptive and flexible approach, to increase their recruitment and retention. Future research should include qualitative interviews to provide further insights into how best to design and conduct research to suit the needs of this population group.

Attitudes and barriers to resistance exercise training for older adults living with multiple long-term conditions, frailty, and a recent deterioration in health: qualitative findings from the Lifestyle in Later Life - Older People's Medicine (LiLL-OPM) study.

BACKGROUND: Many older adults live with the combination of multiple long-term conditions (MLTC) and frailty and are at increased risk of a deterioration in health requiring interaction with healthcare services. Low skeletal muscle strength is observed in individuals living with MLTC and is central to physical frailty. Resistance exercise (RE) is the best available treatment for improving muscle strength, but little is known about the attitudes and barriers to RE in this group of older adults. This study therefore aimed to explore the knowledge of and attitudes towards RE, as well as the barriers and enabling factors, in older adults living with MLTC, frailty and a recent deterioration in health. METHODS: Fourteen participants aged 69-92 years (10 women) from the Lifestyle in Later Life - Older People's Medicine (LiLL-OPM) study were recruited from an Older People's Medicine Day Unit in Newcastle, UK. Participants were invited to take part in a semi-structured interview exploring their knowledge and attitudes as well as barriers and enabling factors to RE. Data were analysed using thematic analysis. RESULTS: The analysis generated three themes (1) a lack of awareness and understanding of RE, (2) a self-perceived inability to perform RE; physical and psychological barriers and (3) willingness to perform RE under expert guidance. There was a general lack of awareness and understanding of RE, with most participants having never heard of the term and being unaware of its potential benefits. When RE was described, participants stated that they would be willing to try RE, but it was apparent that an individualised approach underpinned by expert guidance would be required to support engagement. CONCLUSIONS: Older adults living with MLTC, frailty and a recent deterioration in health lack awareness and understanding of RE. Despite a range of barriers, this group appear willing to engage in RE if they are appropriately supported. There is a need to co-design and deliver effective strategies, including education, to raise awareness and understanding of RE, as well as promote engagement in RE, in this group of older adults.

Lost in translation: how can education about dementia be effectively integrated into medical school contexts? A realist synthesis.

OBJECTIVES: The prevalence of dementia in both community and hospital settings requires a clinical workforce that is skilled in diagnosis and management of the condition to competently care for patients. Though evidence of successful educational interventions about dementia exists, effective translation into medical school curricula is the exception rather than the norm. DESIGN: We adopted a realist synthesis approach following Realist And MEta-narrative Evidence Syntheses: Evolving Standards (RAMESES) guidelines to answer the following questions: (1) what are the barriers to integrating effective interventions about dementia into medical school curricula and (2) where they are successfully delivered, what are the contextual factors that allow for this enactment? DATA SOURCES: We searched PubMed, Embase, CINAHL and PsycINFO using the MesH terms Schools, Medical; Students, Medical; Education, Medical AND Neurocognitive disorders or the closest possible set of terms within each database. ELIGIBILITY CRITERIA: Undergraduate or graduate entry medical school programme, teaching and learning focussing on dementia, evaluating student outcomes (satisfaction, knowledge, skills, attitudes or behaviours), interventions described clearly enough to classify teaching method, any research design (quantitative and qualitative), English language. DATA EXTRACTION AND SYNTHESIS: We used a shared spreadsheet to enter key information about eligible studies and the reasons for excluding studies that did not fit eligibility criteria. We extracted descriptive data about the nature of educational interventions and narrative information as to barriers and facilitators to implementing those interventions. RESULTS: Our initial literature search identified 16 relevant papers for review. Systematic extraction of data informed the development of an initial programme theory (IPT) structured around four contextual barriers: 'culture', 'concern for patient welfare', 'student attitudes' and 'logistics' with associated facilitatory mechanisms embed medical education about dementia. CONCLUSIONS: We outline the process of generating our IPT, including overlap with Cultural Historical Activity Theory. We outline our intention to refine our programme theory through ongoing review of the evidence base and collaboration with stakeholders, with the aim of finalising a model for successful integration of dementia education.

Feasibility of engaging older adults living with multiple long-term conditions, frailty, and a recent deterioration in health in a study of lifestyle: protocol for the LiLL-OPM study.

Community-dwelling older adults living with multiple long-term conditions (MLTC), frailty and a recent deterioration in health are underserved by research. This results in a limited evidence base for their care, including the potential benefits of lifestyle interventions such as structured exercise. The aims of the LiLL-OPM (Lifestyle in Later Life - Older People's Medicine) study are to determine if it is feasible to carry out a research project with these patients, describe their health and lifestyle, their attitudes to engaging in exercise and their experiences of taking part in the research. Older adults who are attending an Older People's Medicine Day Unit service in Newcastle, UK, and their informal carers will be invited to take part. The study will use mixed methods with semi-structured interviews and a health and lifestyle questionnaire, carried out in a way that is most convenient to participants, including in their own homes and with a flexible schedule of study visits. The findings from the feasibility study will provide invaluable data on how to design research, including the most suitable approaches to recruitment and data collection. This will improve the inclusion in research of older adults living with MLTC, frailty and a recent deterioration in health.

Involving older people in inclusive educational research.

Young people entering the workforce will increasingly be working alongside older people and developing strategies to meet the needs and aspirations of older people. Students can be supported to understand the experience of ageing through Intergenerational contact programmes. Newcastle University Ageing Generations Education (NUAGE) is an example of an intergenerational programme in a higher education environment, bringing together undergraduate students and older people to discuss the subject of ageing. NUAGE was designed and delivered in collaboration with students and older people, and this article reports on the outcomes of an inclusive approach to pedagogic evaluation. Older people contributed to a series of consultations to assess the feasibility of an inclusive approach to evaluation of NUAGE and agree on research objectives. Older people subsequently contributed to the methodological plan, gathered data through questionnaires and interviews with student alumni and analysed the data alongside academic staff, providing intuitive and valuable contributions. We found that NUAGE alumni were positive about the impact of participation and cited examples of outcomes such as improved confidence in communicating with older people. Older people who took part in the inclusive evaluation found it to be a rewarding experience, despite some challenges. Our project demonstrates that an inclusive approach to pedagogic research in higher education is feasible and effective.

Paving the translational ageing research pathway-training the next generation of researchers.

Ageing is an archetypal translational research topic, spanning a breadth of academic disciplines. This poses challenges for researchers aiming to act upon laboratory findings to develop and implement interventions that directly benefit older people. Divisions between distinct academic research cultures present barriers to collaborative working. We present potential strategies to improve the translation of ageing research with examples of successful projects working across disciplines. Researchers and clinicians in ageing should be supported to develop a translational interest and receive specific training about translational research.

Medical students' views about person-centred communication in dementia care.

Adopting principles of person-centred communication has been highlighted as one strategy to improve care of people living with dementia (PLWD) in health and social care settings. However, person-centred communication is interpreted and applied variably in different settings, and healthcare professionals' views about communicating with PLWD are under-explored. This study aimed to investigate medical students' views about the principles and applicability of a model of person centred communication - the Dementia Model of Effective Communication (DeMEC) - to clinical practice. Quantitative and qualitative data was collected using questionnaires ( n = 531), focus groups ( n = 21) and interviews ( n = 10). Students generally endorsed the person-centred approach to communication, but two aspects were highlighted as complex and divisive - the acceptability or otherwise of lying, and of communicating with family in advance of the PLWD. We discuss the nature of these communicative dilemmas, implications for the education and training of medical students, and future directions for research.

"Is all the stuff about neurons necessary?" The development of lay summaries to disseminate findings from the Newcastle Cognitive Function after Stroke (COGFAST) study.

PLAIN ENGLISH SUMMARY: Why did we do this study? It can be difficult for scientists to communicate their research findings to the public. This is partly due to the complexity of translating scientific language into words that the public understand. Further, it may be hard for the public to find out about and locate information about research studies. We aimed to adapt some scientific articles about the links between dementia and stroke into lay summaries to be displayed online for the general public. How did we do it? We collaborated with five people from a volunteer organisation, VOICENorth. They took part in two group discussions about studies reporting on the link between dementia and stroke, and selected four studies to translate into lay summaries and display on a website. We discussed the layout and language of the summaries and made adaptations to make them more understandable to the general public. What did we find? We were able to work with members of the public to translate research findings into lay summaries suitable for a general audience. We made changes to language and layout including the use of 'question and answer' style layouts, the addition of a reference list of scientific terms, and removing certain words. What does this mean? Working with members of the public is a realistic way to create resources that improve the accessibility of research findings to the wider public. ABSTRACT: Background Scientific research is often poorly understood by the general public and difficult for them to access. This presents a major barrier to disseminating and translating research findings. Stroke and dementia are both major public health issues, and research has shown lifestyle measures help to prevent them. This project aimed to select a series of studies from the Newcastle Cognitive Function after Stroke cohort (COGFAST) and create lay summaries comprehensible and accessible to the public. Methods We used a focus group format to collaborate with five members of the public to review COGFAST studies, prioritise those of most interest to the wider public, and modify the language and layout of the selected lay summaries. Focus groups were audio-taped and the team used the data to make iterative amendments, as suggested by members of the public, to the summaries and to a research website. We calculated the Flesch reading ease and Flesch-Kincaid grade level for each summary before and after the changes were made. Results In total, we worked with five members of the public in two focus groups to examine draft lay summaries, created by researchers, relating to eight COGFAST studies. Members of the public prioritised four COGFAST lay summaries according to the importance of the topic to the general public. We made a series of revisions to the summaries including the use of 'question and answer' style layouts, the addition of a glossary, and the exclusion of scientific jargon. Group discussion highlighted that lay summaries should be engaging, concise and comprehensible. We incorporated suggestions from members of the public into the design of a study website to display the summaries. The application of existing quantitative tools to estimate readability resulted in an apparently paradoxical increase in complexity of the lay summaries following the changes made. Conclusion This study supports previous literature demonstrating challenges in creating generic guidelines for researchers to create lay summaries. Existing quantitative metrics to assess readability may be inappropriate for assessing scientific lay summaries. We have shown it is feasible and successful to involve members of the public to create lay summaries to communicate the findings of complex scientific research. Trial registration Not applicable to the lay summary project.

Twelve tips for teaching about patients with cognitive impairment.

The global population is ageing and consequently cognitive problems are increasingly prevalent. To ensure that the healthcare needs of this complex group are met, healthcare professionals must receive adequate training in this field. There are, however, a variety of reasons why this is not currently being achieved, including, but not limited to: ethical and logistical issues relating to the delivery of educational experiences involving cognitively impaired patients; a failure of curricula to keep pace with the changing demographic; societal and institutional ageism; and the inherent complexity of the conditions. This article highlights challenges associated with the delivery of such training to medical undergraduates and presents strategies to tackle these. Drawing on current evidence where available, the 12 tips below offer educators practical advice on how to maximize the value of medical undergraduates' educational experiences with cognitively impaired patients.

A systematic review of faculty development initiatives designed to enhance teaching effectiveness: A 10-year update: BEME Guide No. 40.

BACKGROUND: This review, which focused on faculty development initiatives designed to improve teaching effectiveness, synthesized findings related to intervention types, study characteristics, individual and organizational outcomes, key features, and community building. METHODS: This review included 111 studies (between 2002 and 2012) that met the review criteria. FINDINGS: Overall satisfaction with faculty development programs was high. Participants reported increased confidence, enthusiasm, and awareness of effective educational practices. Gains in knowledge and skills, and self-reported changes in teaching behaviors, were frequently noted. Observed behavior changes included enhanced teaching practices, new educational initiatives, new leadership positions, and increased academic output. Organizational changes were infrequently explored. Key features included evidence-informed educational design, relevant content, experiential learning, feedback and reflection, educational projects, intentional community building, longitudinal program design, and institutional support. CONCLUSION: This review holds implications for practice and research. Moving forward, we should build on current success, broaden the focus beyond individual teaching effectiveness, develop programs that extend over time, promote workplace learning, foster community development, and secure institutional support. We should also embed studies in a theoretical framework, conduct more qualitative and mixed methods studies, assess behavioral and organizational change, evaluate transfer to practice, analyse key features, and explore the role of faculty development within the larger organizational context.

Why is dementia different? Medical students' views about deceiving people with dementia.

OBJECTIVES: Care of patients with dementia raises challenging ethical issues, including the use of deception in clinical practice. This study aimed to determine the extent to which medical students agree that ethical arguments for and against deceiving patients in general apply to patients with dementia. METHOD: Qualitative study using six focus groups (n = 21) and 10 interviews (n = 10) with undergraduate students in years 1, 3 and 5 at a UK medical school. Analysis using initial coding followed by comparison of data with a pre-existing framework concerning deception in clinical practice. RESULTS: Arguments for and against deceiving patients with dementia overlapped with those previously described in relation to clinical practice in general. However, the majority of participants highlighted issues unique to dementia care that warranted additional consideration. Three key dementia-specific considerations identified were capacity (understanding, retaining and emotional processing), perceived vulnerability and family dynamics. Students expressed uncertainty as to their ability to make judgements about honest communication with patients with dementia and their families. CONCLUSION: Dementia adds additional complexity to clinical judgements about the acceptability of deception in practice. Medical students have a number of unmet learning needs with regard to communicating with patients with dementia and their families. Existing ethical frameworks may provide a helpful starting point for education about dementia care.

Towards an understanding of why undergraduate teaching about delirium does not guarantee gold-standard practice--results from a UK national survey.

BACKGROUND: delirium is common and serious, yet frequently missed by medical staff. It is known that delirium is widely taught and examined in UK medical schools; however, what is taught, and how such teaching is delivered, remains unknown. The primary aim of this study was to determine the content of UK undergraduate medical education about delirium and establish how it is delivered. A secondary aim was to highlight and share examples of gold-standard teaching on delirium. METHODS: all UK undergraduate medical schools were invited to complete a survey. Schools were asked to describe how delirium was taught and to provide delirium-related learning outcomes. Learning outcomes were mapped to the three overarching themes outlined in Tomorrow's Doctors (knowledge, skills and attitudes). RESULTS: 24/31 schools (77%) provided responses. In line with previous work, delirium was widely taught and examined. 18/24 schools reported at least one learning outcome that mapped to the knowledge domain, 19/24 for the skills domain and 2/24 for the attitudes domain. 4/24 evaluated the impact of sessions and 3/24 involved patients and the public in teaching. 13/24 schools were confident that exposure to delirium was guaranteed. Innovative teaching methods were reported by a number of schools; weblinks to examples are provided. DISCUSSION: there was widespread failure to address attitudes on delirium within teaching, to evaluate the impact of sessions, to involve patients and the public in teaching and to guarantee exposure to delirium. Future teaching interventions should be directed at attitudinal outcomes, using a synthesis of clinical experience with multidisciplinary interaction and supportive technologies.

Comparing the perceptions of academics and members of the public about patient and public involvement in ageing research.

BACKGROUND: public and patient involvement (PPI) in clinical research is increasingly advocated by funding and regulatory bodies. However, little is known about the views of either academics or members of the public about perceptions of the practical realities of PPI, particularly in relation to ageing research. OBJECTIVE: to survey current levels of PPI in biomedical and clinical research relating to ageing at one institution. To compare and contrast the views of academics and the public about PPI relating to research about ageing. DESIGN: electronic survey of senior academics, postgraduate students and members of a local user group for older people. SETTING AND PARTICIPANTS: thirty-three academics (18 principal investigators and 15 PhD students) at a biomedical research institution. Fifty-four members of a local user group for older people. RESULTS: thirty per cent (10/33) of projects described some PPI activity. Older adults were more positive about active involvement in research about ageing than academics. The perceived benefits of and barriers to involvement in research were similar among all groups, although older members of the public were more likely than academics to acknowledge potential barriers to involvement. CONCLUSION: academics and older people share some perceptions about PPI in ageing research, but members of the public are more optimistic about active involvement. Further correspondence between these groups may help to identify feasible involvement activities for older people and encourage collaborative research about ageing.

Medical students' attitudes toward people with dementia: an international investigation.

BACKGROUND: The changing demographics of societies mean that medical students worldwide must be sufficiently prepared to care competently for patients with dementia through development of appropriate knowledge, skills, and attitudes. No previous research had explored undergraduate medical students' attitudes toward people with dementia. METHODS: An adapted version of the Approaches to Dementia Questionnaire (ADQ) was completed by 501 medical undergraduates in years 1, 3, and 5 of their degree programs in the UK and Malaysia. Non-parametric statistical analysis focused on any differences between year groups and geographical locations. RESULTS: The mean ADQ response indicated a generally positive attitude across the sample, comparable with other healthcare professionals previously surveyed. Year 3 and year 5 students expressed significantly more positive attitudes than year 1 students. Year 1 students based in the UK expressed significantly more positive attitudes than year 1 student based in Malaysia, but there were no significant differences between year 3 students based in different locations. CONCLUSION: The more positive attitudes found amongst year 3 and year 5 students compared to year 1 may be a result of teaching emphasizing a person-centered approach. The differences between entry-level students from Malaysia and the UK may reflect variance in cultural norms and expectations, or the ADQ's "Western" origin. Medical schools aiming to equip students with dementia-specific skills and knowledge can draw on the generally positive attitudes found in this study.

Teaching and learning about dementia in UK medical schools: a national survey.

BACKGROUND: Dementia is an increasingly common condition and all doctors, in both primary and secondary care environments, must be prepared to competently manage patients with this condition. It is unclear whether medical education about dementia is currently fit for purpose. This project surveys and evaluates the nature of teaching and learning about dementia for medical students in the UK. METHODS: Electronic questionnaire sent to UK medical schools. RESULTS: 23/31 medical schools responded. All provided some dementia-specific teaching but this focussed more on knowledge and skills than behaviours and attitudes. Only 80% of schools described formal assessment of dementia-specific learning outcomes. There was a widespread failure to adequately engage the multidisciplinary team, patients and carers in teaching, presenting students with a narrow view of the condition. However, some innovative approaches were also highlighted. CONCLUSIONS: Although all schools taught about dementia, the deficiencies identified represent a failure to sufficiently equip medical students to care for patients with dementia which, given the prevalence of the condition, does not adequately prepare them for work as doctors. Recommendations for improving undergraduate medical education about dementia are outlined.

What should we be teaching medical students about dementia?

BACKGROUND: Doctors working in the majority of medical subspecialties provide care for patients with dementia, but there is current international concern that many do not have adequate knowledge or skills to deliver appropriate care for these patients in hospital or community settings. The aim of this review is to draw together recommendations for medical education on dementia and empirical research on teaching interventions concerning dementia in order to assess the current provision of training using the UK model as an example. METHODS: Database and manual searches were undertaken to identify relevant articles for a narrative review. RESULTS: UK national guidelines recommend that dementia-specific education should be available to trainees in the undergraduate and postgraduate environment. A sample of undergraduate curricula shows considerable variation in the delivery of teaching about dementia. "Non-specialist" postgraduate curricula make reference to care of patients with confusion, but do not always include learning outcomes specific to cognitive impairment or dementia. Teaching interventions trialed in the postgraduate environment provide encouraging qualitative feedback from participants, but do not consistently demonstrate improvement in participants' knowledge, skills or attitudes. CONCLUSIONS: There is a pressing need to improve undergraduate medical education on dementia in order to help future doctors obtain the ability to provide competent care for patients. There is scope for ongoing research to refine existing curricula covering dementia and to build an evidence-base for successful dementia-specific teaching interventions.

Optimizing communication between medical professionals and people living with dementia.

BACKGROUND: A growing body of research evidence indicates that improving communication with people living with dementia (PLWD) has a positive effect on their quality of life. Policy initiatives internationally highlight the prevalence of poor communication practices in care environments in general and medical contexts in particular as priority areas for improvement. Currently available communication interventions exhibit shortcomings, and their application remains unusual. METHODS: A spectrum of multidisciplinary professional and lay stakeholders, including PLWD, took part in an iterative consultation process in the UK. This aimed to develop a communications advice package which would meet their needs, and involved observation of practice in a variety of care contexts and semi-structured focus group and individual interviews. RESULTS: Lay participants reported dissatisfaction with current communicative practices, particularly during contact with medical professionals. Both lay and professional participants reported general dissatisfaction with currently available communication advice. An agreed version of a dementia toolkit for effective communication (DEMTEC) was produced. This consists of three "levels". The foundation Level 1 details beliefs about the psychosocial effects of dementia on communication, as well as empowering approaches to communication involving PLWD. Level 2 consists of practical considerations and advice in eight key areas. Level 3 uses case studies to show how the principles and advice in preceding levels are applicable to individuals in different care contexts and at different stages of dementia. CONCLUSION: The project has produced a free-to-users instrument that is empirically supported and adaptable to individual PLWD and to a range of health, care and sociocultural environments.