Role and response of primary healthcare services in community end-of-life care during COVID-19: Qualitative study and recommendations for primary palliative care delivery.

BACKGROUND: The need for end-of-life care in the community increased significantly during the COVID-19 pandemic. Primary care services, including general practitioners and community nurses, had a critical role in providing such care, rapidly changing their working practices to meet demand. Little is known about primary care responses to a major change in place of care towards the end of life, or the implications for future end-of-life care services. AIM: To gather general practitioner and community nurse perspectives on factors that facilitated community end-of-life care during the COVID-19 pandemic, and to use this to develop recommendations to improve future delivery of end-of-life care. DESIGN: Qualitative interview study with thematic analysis, followed by refinement of themes and recommendations in consultation with an expert advisory group. PARTICIPANTS: General practitioners (n = 8) and community nurses (n = 17) working in primary care in the UK. RESULTS: General practitioner and community nurse perspectives on factors critical to sustaining community end-of-life care were identified under three themes: (1) partnership working is key, (2) care planning for end-of-life needs improvement, and (3) importance of the physical presence of primary care professionals. Drawing on participants' experiences and behaviour change theory, recommendations are proposed to improve end-of-life care in primary care. CONCLUSIONS: To sustain and embed positive change, an increased policy focus on primary care in end-of-life care is required. Targeted interventions developed during COVID-19, including online team meetings and education, new prescribing systems and unified guidance, could increase capacity and capability of the primary care workforce to deliver community end-of-life care.

Impact of Covid-19 on lung cancer and mesothelioma specialist nurses: A survey of experiences and perceptions.

PURPOSE: The covid-19 global pandemic has impacted on nurses who have rapidly adapted to new ways of working, and experienced negative impacts due to over-stretched services. Two surveys captured the experiences of lung cancer and mesothelioma specialist nurses in the United Kingdom (UK) in 2020, but the impact of later stages of the pandemic was unknown. This study aimed to explore the impact of covid-19 on lung Cancer and mesothelioma nurses since January 2021, the second wave of the pandemic. METHODS: An online cross-sectional survey with both open and closed questions explored the impact of covid-19 on ways of working and workload, quality of care, and health and wellbeing. The survey was open to UK based lung cancer and mesothelioma advanced or specialist nurses. RESULTS: 85 nurses responded to the survey. The majority were Clinical Nurse Specialists, based in England. Respondents reported changes in ways of working due to redeployment, staff shortages, and home working. Widespread adoption of virtual working practices led to concerns of negative impacts. Perceived excessive workload impacted on care with two-thirds of the sample (57, 67%) reporting they had been unable to provide the same quality of care to patients. Impacts on nurses' health and wellbeing were reported with two-thirds of the sample (56, 66%) reporting a deterioration in emotional wellbeing and mental health. Coping mechanisms employed included online team support to share experiences and increased uptake of exercise; however, impacts on lifestyle and access to coping mechanisms varied. CONCLUSION: Nurses have stepped up to the challenges of the pandemic with teamwork and innovation, but pressure arising from the pandemic and high workloads led to negative impacts on wellbeing. The authors have provided recommendations to improve patient care and support the wellbeing of nurses, which will be key to a resilient workforce living with covid-19. Whilst this study focussed on lung cancer and mesothelioma specialists, the findings have wider implications for other cancer specialties.

Impact of Covid-19 on lung cancer and Mesothelioma specialist nurses: A survey of experiences and perceptions

Purpose The covid-19 global pandemic has impacted on nurses who have rapidly adapted to new ways of working, and experienced negative impacts due to over-stretched services. Two surveys captured the experiences of lung cancer and mesothelioma specialist nurses in the United Kingdom (UK) in 2020, but the impact of later stages of the pandemic was unknown. This study aimed to explore the impact of covid-19 on lung Cancer and mesothelioma nurses since January 2021, the second wave of the pandemic. Methods An online cross-sectional survey with both open and closed questions explored the impact of covid-19 on ways of working and workload, quality of care, and health and wellbeing. The survey was open to UK based lung cancer and mesothelioma advanced or specialist nurses. Results 85 nurses responded to the survey. The majority were Clinical Nurse Specialists, based in England. Respondents reported changes in ways of working due to redeployment, staff shortages, and home working. Widespread adoption of virtual working practices led to concerns of negative impacts. Perceived excessive workload impacted on care with two-thirds of the sample (57, 67%) reporting they had been unable to provide the same quality of care to patients. Impacts on nurses’ health and wellbeing were reported with two-thirds of the sample (56, 66%) reporting a deterioration in emotional wellbeing and mental health. Coping mechanisms employed included online team support to share experiences and increased uptake of exercise;however, impacts on lifestyle and access to coping mechanisms varied. Conclusion Nurses have stepped up to the challenges of the pandemic with teamwork and innovation, but pressure arising from the pandemic and high workloads led to negative impacts on wellbeing. The authors have provided recommendations to improve patient care and support the wellbeing of nurses, which will be key to a resilient workforce living with covid-19. Whilst this study focussed on lung cancer and mesothelioma specialists, the findings have wider implications for other cancer specialties.

Clinical nurse specialist role in providing generalist and specialist palliative care: A qualitative study of mesothelioma clinical nurse specialists.

AIM: To explore perspectives of Mesothelioma UK clinical nurse specialists (CNSs) on their role in providing palliative care for patients with mesothelioma and their families. DESIGN: A qualitative descriptive approach using focus group and interview methods. METHODS: Focus groups and semi-structured interviews were conducted with 16 Mesothelioma UK clinical nurse specialists using the online software Google Meet. Data collection was carried out in Jan-Feb 2021 and data were analysed using thematic analysis. The consolidated criteria for reporting qualitative research (COREQ) was used as the reporting guideline for this paper. RESULTS: Four main themes were identified from the data: Mesothelioma UK clinical nurse specialist role in relation to palliative care; joint working with specialist palliative care and community services; patients and family carer's willingness to engage with palliative care services; and the impact of COVID-19 on palliative care for mesothelioma patients. CONCLUSION: This study provides valuable insights into palliative care needs in mesothelioma. Patients with mesothelioma and their families have significant palliative care needs throughout the course of their illness from diagnosis to the end of life. Mesothelioma UK CNS's play a crucial role in supporting patients' and families palliative care needs, and are highly skilled in providing this care. IMPACT: By acknowledging the role of Mesothelioma UK CNS's in palliative care provision, and supporting collaborative working between specialist and generalist palliative care providers, there is the capacity to significantly improve palliative care in mesothelioma and improve outcomes for patients and their families.

Service change and innovation in community end-of-life care during the COVID-19 pandemic: Qualitative analysis of a nationwide primary care survey.

BACKGROUND: Primary healthcare teams (general practice and community nursing services) within the United Kingdom provided the majority of community end-of-life care during COVID-19, alongside specialist palliative care services. As international healthcare systems move to a period of restoration following the first phases of the pandemic, the impact of rapidly-implemented service changes and innovations across primary and specialist palliative care services must be understood. AIM: To provide detailed insights and understanding into service changes and innovation that occurred in UK primary care to deliver end-of-life care during the first phase of the COVID-19 pandemic. DESIGN: Cross-sectional online survey. Responses were analysed using descriptive statistics and thematic analysis. SETTING/PARTICIPANTS: United Kingdom survey of general practitioners and community nurses, circulated via regional and national professional networks. RESULTS: A total of 559 valid responses were received from 387 community nurses, 156 general practitioners and 16 'other'. Over a third of respondents (n = 224; 40.8%) experienced changes in the organisation of their team in order to provide end-of-life care in response to the COVID-19 pandemic. Three qualitative themes were identified: COVID-19 as a catalyst for change in primary palliative care; new opportunities for more responsive and technological ways of working; and pandemic factors that improved and strengthened interprofessional collaboration. CONCLUSION: Opportunity has arisen to incorporate cross-boundary service changes and innovations, implemented rapidly at the time of crisis, into future service delivery. Future research should focus on which service changes and innovations provide the most benefits, who for and how, within the context of increased patient need and complexity.

Role and support needs of nurses in delivering palliative and end of life care.

The coronavirus disease 2019 (COVID-19) pandemic has led to a significant increase in the demand for palliative and end of life care, particularly in the community. Furthermore, palliative and end of life care services face growing pressures due to the increasing number of older people and increasing prevalence of chronic illness. Palliative and end of life care cannot be provided solely by specialists but needs to be integrated into mainstream healthcare. All nurses have a role in supporting patients with life-limiting conditions, and their families, by providing what is termed 'generalist palliative care'. However, some nurses may feel unprepared, unsupported or lacking the confidence and skills for that role. This article explores the definitions of palliative and end of life care, as well as the changes and challenges in service provision brought about by the COVID-19 pandemic. It also considers how nurses who have not specialised in this area of practice can be supported to care effectively for patients with life-limiting conditions, and their families, notably through workforce development initiatives such as training programmes and clinical supervision. This could not only increase the skills of the nursing workforce but also improve patient care.

Effects of the COVID-19 pandemic on people with mesothelioma and their carers

Why you should read this article:• To improve your knowledge of mesothelioma• To familiarise yourself with the effects of the coronavirus disease 2019 (COVID-19) pandemic on the healthcare of people with mesothelioma• To understand how to ensure that people with mesothelioma receive quality care and support during the COVID-19 pandemicMesothelioma is a rare, life-limiting and aggressive cancer with a high symptom burden. This article explores the effect of the coronavirus disease 2019 (COVID-19) pandemic on the experiences of patients with mesothelioma and their carers. The charity Mesothelioma UK conducted a service evaluation that included two surveys – one with patients with mesothelioma and their carers, and the other with UK mesothelioma clinical nurse specialists – to explore the effects of the COVID-19 pandemic.This article presents the results of these surveys, which suggest that patients with mesothelioma and their carers have been disproportionately affected by the COVID-19 pandemic in various areas. These include treatment and investigations, communication with healthcare teams, confusion concerning shielding, and the emotional and psychological burden of the pandemic. The authors include recommendations for practice to ensure patients and their families receive optimal treatment and support during the remainder of the pandemic.

Community end-of-life care during the COVID-19 pandemic: findings of a UK primary care survey.

BACKGROUND: Thousands of people in the UK have required end-of-life care in the community during the COVID-19 pandemic. Primary healthcare teams (general practice and community nursing services) have provided the majority of this care, alongside specialist colleagues. There is a need to learn from this experience in order to inform future service delivery and planning. AIM: To understand the views of GPs and community nurses providing end-of-life care during the first wave of the COVID-19 pandemic. DESIGN & SETTING: A web-based, UK-wide questionnaire survey circulated via professional general practice and community nursing networks, during September and October 2020. METHOD: Responses were analysed using descriptive statistics and an inductive thematic analysis. RESULTS: Valid responses were received from 559 individuals (387 community nurses, 156 GPs, and 16 unspecified roles), from all regions of the UK. The majority reported increased involvement in providing community end-of-life care. Contrasting and potentially conflicting roles emerged between GPs and community nurses. There was increased use of remote consultations, particularly by GPs. Community nurses took greater responsibility in most aspects of end-of-life care practice, particularly face-to-face care, but reported feeling isolated. For some GPs and community nurses, there has been considerable emotional distress. CONCLUSION: Primary healthcare services are playing a critical role in meeting increased need for end-of-life care in the community during the COVID-19 pandemic. They have adapted rapidly, but the significant emotional impact, especially for community nurses, needs addressing alongside rebuilding trusting and supportive team dynamics.

5 Primary care delivers palliative care during COVID-19: a national UK survey of GP’s and community nurses

BackgroundRapid, dramatic changes in primary healthcare services occurred during the COVID-19 pandemic. More palliative and end-of-life care (PEOLC) in the community and care homes needed delivered in new ways. This study sought General Practitioner (GP) and community nursing views about changes related to PEOLC during the COVID-19 pandemic.MethodsA national online survey was developed from current literature, patient, public and key stakeholder involvement and disseminated to GPs and community nurses between 01.09.2020 and 16.10.2020. Fixed response and open free text questions addressed demographics, PEOLC provision, changes, challenges and exemplars of good practice.ResultsThere were 559 responses (387 (71.3%) community nurses;156 (28.7%) GPs;6 ‘role not specified’) from all UK countries. Over half (296, 53.1%) cared for patients dying with ‘confirmed’ COVID-19 and provided PEOLC ‘a lot more’ or ‘a bit more than usual’ to non-COVID patients (322, 58.2%).All respondents reported increased need to provide family support (339, 60.9% providing ‘a lot’/’a bit more than usual’);a larger proportion of community nurses (252, 66.0%) reported this role change compared with doctors (75, 48.1%, p=0.01). Over forty percent of all respondents reported they were undertaking more advance care planning (266, 53.0%), anticipatory prescribing (227, 56.4%), symptom management (275, 51.1%), death verification (222, 47.8%) and bereavement support (237, 44.6%). Over three-quarters (211, 77.0%) of community nurses had conducted ‘more’/‘a lot more’ face-to-face visits, whereas 53 (34.0%) of GPs had done ‘less’ or ‘a lot less’ (<0.0001).Qualitative free-text themes relate to increasing end-of-life care workload;changing roles and models of consultation;and emotional impact.ConclusionsContrasting and potentially conflicting roles emerged between GPs and community nurses concerning their response to the increased demand and complexity of PEOLC during the pandemic. The significant emotional impact, especially for community nurses, needs addressing alongside rebuilding trusting and supportive team dynamics.

The role and response of primary healthcare services in the delivery of palliative care in epidemics and pandemics: A rapid review to inform practice and service delivery during the COVID-19 pandemic.

BACKGROUND: The increased number of deaths in the community happening as a result of COVID-19 has caused primary healthcare services to change their traditional service delivery in a short timeframe. Services are quickly adapting to new challenges in the practical delivery of end-of-life care to patients in the community including through virtual consultations and in the provision of timely symptom control. AIM: To synthesise existing evidence related to the delivery of palliative and end-of-life care by primary healthcare professionals in epidemics and pandemics. DESIGN: Rapid systematic review using modified systematic review methods, with narrative synthesis of the evidence. DATA SOURCES: Searches were carried out in Medline, Embase, PsychINFO, CINAHL and Web of Science on 7th March 2020. RESULTS: Only five studies met the inclusion criteria, highlighting a striking lack of evidence base for the response of primary healthcare services in palliative care during epidemics and pandemics. All were observational studies. Findings were synthesised using a pandemic response framework according to 'systems' (community providers feeling disadvantaged in terms of receiving timely information and protocols), 'space' (recognised need for more care in the community), 'staff' (training needs and resilience) and 'stuff' (other aspects of managing care in pandemics including personal protective equipment, cleaning care settings and access to investigations). CONCLUSIONS: As the COVID-19 pandemic progresses, there is an urgent need for research to provide increased understanding of the role of primary care and community nursing services in palliative care, alongside hospices and community specialist palliative care providers.