ABSTRACT
Context. Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations. Objectives. To explore the impact of the COVID-19 pandemic and lockdowns on this population. Methods. Sub-analysis of an emergent COVID-19 related theme from a larger semi-structured interview study investigating priority pediatric palliative care outcomes. One hundred and six United Kingdom-wide purposively-sampled Children and young people with life-limiting or life-threatening conditions, parent/carers, siblings, health professionals, and commissioners. Results. COVID-19 was raised by participants in 12/44 interviews conducted after the United Kingdom's first confirmed COVID-19 case. Key themes included loss of vital social support, disruption to services important to families, and additional psychological distress. Conclusion. Continued delivery of child- and family-centered palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring cordination for families facing multiagency delays. (C) 2022 The Authors. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.
ABSTRACT
Background/aims: COVID-19 has had a devastating impact on care homes, their residents and families, and staff. More than 40,000 UK care home residents have died from COVID-19;many more have experienced symptoms and distress. The aim was to explore experiences of care home staff of providing palliative and end-of-life care (PEoLC) during COVID-19, and make policy recommendations. Methods: Mixed methods study comprising 1) Online survey (in REDCap) of UK care home staff, identified through established networks. The survey was developed from a rapid literature review and included structured and free-text data. 2) Qualitative interviews with care home staff (identified from 1);findings analysed thematically to identify policy recommendations for improving PEoLC. Results: 107 survey responses from across UK;57 (53%) had onsite nursing care. 72 (67%) experienced COVID-19 outbreaks;48 (45%) reported staff shortages;75 (70%) reported staff stress. Challenges included assessing and managing physical symptoms (17, 16%), spiritual needs (26, 24%) and social/family needs (56, 52%). 26 (24%) reported quality of PEoLC fluctuated during the pandemic. 26 qualitative interviews were carried out. Themes: 1/ Workforce. Staff experienced multiple pressures (more deaths, staff sickness/bereavement, new roles), mitigated by adapting working patterns and living arrangements, providing emotional and practical support, and fostering a sense of partnership. 2/ Integration. Integration with GPs, palliative care teams, pharmacists and community nurses varied. Digital communications, shared records, hotlines, regular meetings and strong relationships facilitated good PEoLC. 3/ Legacy. Positive outcomes emerged from the rapid changes made, including a sense of empowerment, pride and confidence among staff. This was undermined by feeling under-recognised and undervalued. Conclusions: Improving PEoLC in care homes is a priority. Recognition of care home expertise, and improved integration with community services, are essential.
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Background: Internationally, COVID-19 has placed additional strain on already stretched health care systems. This has influenced how specialist palliative care organisations and their staff have been able to respond to clinical need in accordance with their professional values. Aims: To explore how COVID-19 impacted specialist palliative care staff and how organisations responded to the impact of the pandemic on staff well-being. Methods: Qualitative multiple case study, part of the CovPall study. Cases were English hospices providing specialist palliative care services in any setting. Semi structured interviews were carried out with hospice staff between 11/20-04/21, purposefully sampled by role, care setting and COVID-19 experience. Interviews were analysed using framework analysis. Results: Five cases (n=24 participants). Infection control constraints (e.g., visiting restrictions, PPE) prohibited and diluted participants' ability to provide care that reflected their core values. This resulted in staff experiencing moral distress. Despite organisational, team, and individual support strategies to address staff well-being, continually managing these constraints led to a 'crescendo effect' in which the impacts of moral distress (e.g., sadness, guilt, frustration, and fatigue) accumulated over time, sometimes leading to burnout. Some gained 'moral comfort' from solidarity with colleagues and making a valued contribution. Conclusions: This study provides a useful insight into why and how specialist palliative care staff experienced moral distress during COVID-19, and how organisations have responded. Despite their expertise in caring for the dying, staff well-being and mental health was affected by the pandemic. Prolonged experiences of moral distress has a detrimental impact on staff and the quality of care. Organisational, structural, and policy changes are urgently required to mitigate and manage these impacts.
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Introduction: Breathlessness support services for patients with chronic breathlessness improve patients' self-management and reduce their distress due to breathlessness. The provision and access to such services within the UK's National Health Service is limited. Delivering online breathlessness supportive services maybe one way of improving access to non-pharmacological self-management interventions for people living with chronic breathlessness. Aim: To explore internet accessibility and willingness of patients with chronic respiratory disease to use an internet-based breathlessness selfmanagement intervention. Methods: Patients attending 3-specialist respiratory outpatient services at a large NHS Foundation Trust over a 2-week period (prior to the COVID-19 pandemic) completed a standardised questionnaire regarding internet accessibility. The questionnaire asked;if the patient had internet access, modes of accessing the internet, frequency of internet use and if they would use an internet based breathlessness support service. Results: 46 patients (COPD: 19, Bronchiectasis: 22, Asthma: 4), 17 male, with a median (range) age 68 (41 - 86) years, MRC Dyspnoea Score of 2 (2-4) completed the questionnaire. Of these, 35 (76%) patients had access to the internet at home;28 (61%) accessed the internet daily;and 26 (57%) had two or more modes of accessing the internet. Of the 35 patients with home internet access, 33 (94%) reported that they would use an internet-based breathlessness self-management intervention, if available. Conclusion: These preliminary findings suggest that patients that have access to the internet would use an internet-based breathlessness selfmanagement intervention, if given the opportunity.
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Background: The COVID-19 pandemic has led to excess mortality globally. Understanding change in place of death during the pandemic is needed to help guide resource allocation and support for end-of-life care. Aims: To analyse the patterns of mortality and place of death in UK (England, Wales, Scotland and Northern Ireland) during the COVID-19 pandemic. Methods: Descriptive analysis of UK mortality data between March 2020 and February 2021. The weekly number of deaths in each nation was described by place of death using the following definitions: (1) Average deaths estimated using five years of historical data (2015-19);(2) Baseline deaths up to and including expected deaths but excluding COVID-19 deaths;(3) Deaths where COVID-19 is mentioned on the death certificate;(3) Additional deaths not attributed to COVID-19. Results: During the analysis period, there were 743,172 deaths in the UK, of which 135,716 were COVID-19 related and 17,672 were additional non-COVID deaths. There was variation in mortality between the UK nations with Wales having the highest rate of COVID-19 deaths at 229 per 100,000 population and Northern Ireland the lowest at 141 per 100,000 population. Deaths in care homes increased above baseline levels during the first and second waves of the pandemic but fell below baseline between waves, increasing the most in Wales by 29%. Hospital deaths increased overall by as much as 13% in England but fell by 1% in Scotland. Deaths at home remained above average throughout the study period with an overall increase of between 40-41%. In England and Wales, 15-30% fewer people died in hospices compared to baseline. Discussion: The COVID-19 pandemic has changed where people die in the UK. Notably a sustained increase in deaths at home has been seen, with implications for planning and organisation of palliative care and community services. Examination of place of death in other countries with high COVID-19 mortality is recommended.
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Background: Palliative care improves COVID-19 patient management who are highly vulnerable and facing higher risk of dying. However, evidence regarding palliative care preparedness and response plans is limited in the Asia-Pacific region. Aim: To evaluate the preparedness of palliative care services in the Asia- Pacific region to respond to the COVID-19 pandemic. Method: An online cross-sectional survey was developed based on prior methodology guidance and the International Health Regulations. It was emailed to the Asia-Pacific Hospice and Palliative Care Network subscribers (n=1551) and organisational members (n=185) from 10th June to 1st July 2020. Descriptive analysis was used for reporting. Results: Ninety-seven respondents completed the survey. Around half of services were hospital-based (n=47, 48%), and public-funded (n=46, 47%). Half of services reported to have confirmed cases (n=47, 49%). Staff perceived moderate stress of being infected by COVID-19 (median: median: 7 on a 1-10 scale). > 85% of respondents reported they had up-to-date contact list for staff and patients, however one-third revealed challenges to keep record of relatives (n=30, 31%) and patients visited in communities (n=29, 30%). Majority of services (60%) obtained adequate infection control resources except face mask. More than half had no guidance on Do Not Resuscitate orders (n=59, 66%) and bereavement care (n=44, 51%). One-third considered they had capacity to train nonpalliative care specialists in using protocols. Conclusion: Recommendations to strengthen the palliative care preparedness include: 1) improving the access to infection control materials such as face mask and hand disinfectants;2) acquiring stress management protocols for staff when unavailable;3) reinforcing the contact tracing system for relatives and patients visited in the community and 4) developing guidance on patient and family care before and after patients' deaths.
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Background: Palliative care and hospice services responded to the Covid-19 pandemic, but it is not clear how their workload has been affected. Aim: To identify factors associated with busyness in UK palliative care services during the Covid-19 pandemic. Methods: Online survey of clinical leads of palliative care services to understand the palliative care response to COVID-19 (CovPall). Study population characteristics were described. Unadjusted and multivariable ordinal logistic regression investigated factors (type of service, management type, number of confirmed (by test) Covid-19 cases, region, staff shortages) associated with busyness. Busyness was measured using a five-point scale (a lot less busy, slightly less busy, about the same, slightly more busy, a lot more busy). Results: 277 UK respondents: 33 Scotland, 4 Northern Ireland, 15 Wales, 225 in nine regions of England. Services reported being a lot more busy (71, 26%), slightly more busy (62, 22%), about the same (53, 19%), slightly less busy (50, 18%), much less busy (28, 10%). Multivariable analysis showed the following factors were associated with increased busyness: being a specialist palliative home care service (OR 1.93, 95% CI 1.15-3.25), providing hands on nursing care at home or in the community (OR 3.24, 95% CI 1.70-6.19), confirmed number (by test) Covid-19 cases (OR 1.01, 95% CI 1.00-1.01), being a publicly managed (NHS) service (OR 2.20, 95% CI 1.11-4.34), and experiencing staff shortages (OR 2.71, 95% CI 1.64-4.48). Conclusion: Community services and those publicly managed (NHS services) experienced increased busyness during Covid-19 pandemic. This suggests these services may have been more able to shift resources to respond to increased needs and changing patient priorities during the pandemic. This has implications for future funding models for palliative care.
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Background: The disproportionately high death rate of those from ethnic minority groups from COVID-19 is well documented. Little is known about how palliative care services have responded. Aims: To map and develop insights into the response of palliative care services caring for patients and families from ethnic minority groups during the COVID-19 pandemic. Methods: (design, data collection, analysis): Cross-sectional on-line survey of UK palliative care services' response to COVID-19. Quantitative data were summarised descriptively and chi-square tests used to explore relationships between categorical variables. Open-ended responses were analysed using reflexive thematic analysis. Results: 93/277 (34%) responding palliative care services reported on care for COVID-19 patients from ethnic minority groups (60/123 (49%) hospital palliative care teams and 35/152 (23%) hospice inpatient teams). Nearly two-thirds (59%) of services offered care across multiple settings. Services who supported those from ethnic minority groups were more likely to have hospital palliative care teams (χ2 =15.21, p <0.001) and less likely to have inpatient hospice (χ2 = 30.11, p <0.001) or home palliative care teams (χ2 = 7.05, p= 0.008). 61/93 (66%) responding services stated there was no difference in how they supported or reached ethnic minority groups. Five main themes were identified from free-text comments: 1) disproportionate adverse impact of restricted visiting 2) compounded communication challenges 3) unmet religious and faith needs 4) mistrust of services and 5) equal but inequitable service response. Conclusion / Discussion: Policies introduced during the COVID-19 pandemic may have disproportionately adversely impacted those from ethnic minority groups. The palliative care response may have been both unequal and inequitable. The traditional focus of personalised care is not enough. We provide urgent recommendations for service providers and policymakers.