Losing Ground during COVID-19: Dementia Caregivers' Shifting Perceptions of Place

In the wake of COVID-19, Canadian federal and provincial governments implemented gathering restrictions to prevent or limit its spread. These restrictions significantly impacted where Canadians spend their time, how they do so and with whom. Prior to the pandemic, people living with dementia (PLWD) and the family members, friends, and neighbours who support their care already encountered physical, health, and social challenges relating to participation in private and public places. Under pandemic conditions, these challenges were magnified and contributed to differences in the ways community was understood and practiced. A rapid research project in the province of Nova Scotia, Canada, exploring COVID-19-related changes to community-based dementia care supports and services highlighted changes toward places of residence, public places, and virtual settings through interviews with unpaid caregivers of PLWD. Findings demonstrated a shift in activities and experiences associated with places during COVID-19 restrictions and lockdown measures. From what home means to community places and virtual places, this article considers the ways in which COVID-19 restrictions and measures are redefining the meanings and significance of places for unpaid caregivers of PLWD in the province of Nova Scotia in Atlantic Canada.

Maintaining Quality of Palliative Care in a Global Pandemic: Experiences of Health Care Professionals From 14 Countries During the COVID-19 Pandemic (the CO-LIVE Study)

Background/aims: During the COVID-19 pandemic, measures imposed by governments and healthcare institutions to limit spreading of the disease may have negatively impacted the quality of care for dying patients. Our aim was to provide insight into similarities and differences between countries in the experiences of healthcare workers caring for patients in their last days of life during the COVID-19 pandemic. Methods: An open online survey study, consisting of purposively designed measures of perceived quality of care for dying patients, was conducted among healthcare workers from April 2020 to June 2021 in Belgium, Czech Republic, Norway, Slovenia, the Netherlands, United Kingdom, Argentina, Brazil, Chile, Colombia, El Salvador, Uruguay, Indonesia and Japan. Descriptive statistics were calculated. Results: A total of 3112 healthcare workers from 14 countries completed the questionnaire. The number of respondents per country ranged from 44 respondents in El Salvador, to 764 respondents in the Netherlands. The percentage of respondents who indicated that treatment and care for dying patients had been limited due to the pandemic ranged from 13% in Norway to 88% in Slovenia. Nevertheless, the majority of health care professionals considered the quality of medical care sufficient to meet the patient's needs, with percentages ranging from 73% in the Czech Republic to 99% in Colombia. Nursing care was also considered sufficient by the majority of health care professionals, with percentages ranging from 59% in Argentina to 96% in Chile. Conclusions: Preliminary results show important differences between countries in the impact of the COVID-19 pandemic and related measures on end-of-life care. Although in all countries the majority of healthcare workers reported sufficient quality of medical and nursing care, there were large differences in perceived limitations in treatment and care due to the pandemic.

An Evaluation of End of Life Care Experiences in Care Homes in the UK During the Pandemic

Background/aims: Care homes in Europe have been profoundly impacted by the COVID-19 pandemic with increased resident mortality. They needed to respond to shifting government guidelines for infection control procedures and restrictions in visiting. This all occurred under the scrutiny of the media. Aim: to evaluate end of life a care experiences in care homes in the UK. Methods: A mixed method approach. We used a database of about 6000 care home residents were we could track when they interacted with health care services including community nursing input, admission to hospital (and A&E) and clinic appointments. We also conducted interviews (n=24) with care home staff, residents and families from 8 care homes which were analysed using framework analysis. Results: A large spike in deaths occurred in April/May 2020. This coincided with only about a quarter of outpatient appointments taking place. Inpatient admissions dropped by half and A&E attendance by a quarter. Community nursing input to care homes reduced by a third. Interviews suggested that staff were inundated with COVID-19 information via email but felt 'abandoned' with few nursing services operating in person. At the beginning of the pandemic some community nursing staff helped produce emergency care plans, usually over the phone, but some care homes interpreted this to mean residents were going to be 'left to die'. Care home staff felt guilt about deaths related to COVID-19 and this took a toll on their emotional well-being. This was exacerbated by needing to 'police' family visiting with residents who were actively dying. Conclusions: Care home residents experienced a dramatic reduction in services outside of the care home coupled with a large increase in deaths. Many staff wanted greater input from external services especially community nursing teams to support them.

iLIVE Project Volunteer Study: Using a Newly Developed European Core Curriculum (Ecc) To Develop and Implement End-Of-Life-Care Volunteer Services Within 5 Hospitals Across 5 Countries

Background: Across Europe palliative and end-of-life-care volunteer services (EOLC-VS) in the hospital setting are relatively uncommon, particularly for patients in the last weeks of life. The iLIVE Volunteer Study, one of 8 work-packages within the iLIVE Project, conducted an international Delphi study to develop a European Core Curriculum for EOLC-VC's, including associated training manuals. The ECC was designed to empower Volunteer Coordinators (VC's) to develop and implement EOLC-VS's in 5 hospitals in 5 countries, adapted to local cultural and organisational contexts. A case study to providing in-depth assessment of the facilitators and barriers in one hospital in the Netherlands has been undertaken (results reported elsewhere). Aim: To support Volunteer Coordinators (VC's) to initiate EOLC-VS's in 5 hospitals across 5 European countries. Methods: VC's attended a 3-day International Training Programme to examine and adapt the ECC implementation and training manuals to their individual organisational and cultural contexts. Due to COVID-19, virtual resources for support were engaged, including international networking sessions between EOLC volunteers and VC's. Structured feedback from VC's were collected at the 3-day training programme and throughout development, training of volunteers, and implementation of EOLC-VC's. Results: The ECC provided VC's with a practical guide to design and implement EOLC-VC's within the complex environment of a hospital. The supportive resources gave VC's an opportunity to share learning, facilitating a deeper understanding of the ECC, as well as enable the sharing of practical experiences during service development and implementation using the ECC. Conclusions: The ECC, with supportive resources, enabled successful implementation of hospital EOLC-VC's volunteer services across 5 countries. Further research to assess the use and experience of these services is now underway as part of the iLIVE Volunteer Study.

A Feasibility Cluster Randomised Controlled Trial of Paramedic- Administered Breathlessness Management Intervention for Acute- On-Chronic Breathlessness (BREATHE): Study Findings

Background/aims: One-fifth of conveyances to the emergency department (ED) are due to acute-on-chronic breathlessness. Paramedic breathlessness management may ease distress quicker and/or reduce ED conveyances. We evaluated the feasibility of a full trial of a paramedic delivered intervention to reduce avoidable conveyances (recruitment, randomisation, consent, training and intervention acceptability, adherence, data quality, best primary outcome, sample size estimation). The intervention comprised evidence-based non-drug techniques and a self-management booklet. Methods: This mixed-methods feasibility cluster randomised controlled trial (ISRCTN80330546) with embedded qualitative study about trial processes, training and intervention delivery, randomised paramedics to usual care or to intervention + usual care. Retrospective patient consent to use call-out data and prospective patient/carer consent for follow-up was sought. Potential primary outcomes were breathlessness intensity (numerical rating scale) and ED conveyance. Follow-up included an interview for patients/carers and questionnaires at 14 days, 1 and 6 months and paramedic focus groups and survey. Results: Recruitment was during the COVID-19 pandemic, leading to high demands on paramedics and fewer call-outs by eligible patients. We enrolled 29 paramedics;9 withdrew. Randomisation and trial procedures were acceptable. Paramedics recruited 13 patients;8 were followed up. Data quality was good. The intervention did not extend call-out time, was delivered with fidelity and no contamination and was acceptable to patients, carers and paramedics. There were no repeat call-outs < 48 hours. Recruitment stop-go criteria were not met. We had insufficient data for sample size estimation. Conclusions: A full trial in the same circumstances is not feasible. However, valuable information was gained on recruitment, attrition, consent, training and intervention acceptability and adherence, and patient-reported data collection.

Post-intensive care COVID survivorship clinic: a single centre experience

Introduction: Patients discharged from the intensive care unit (ICU) post coronavirus-19 (COVID-19) pneumonitis may experience longterm morbidity related to their critical illness, the treatment for this and the ICU environment. Methods: We performed a prospective cohort study in a post-ICU (PICS) follow-up clinic at Tallaght University Hospital in October 2020 for patients who had been admitted to the ICU in our institution with COVID-19 pneumonitis six months earlier. Our clinic was staffed by critical care physicians, a psychologist, a physiotherapist and a research nurse. Our aim was to characterise the cognitive, psychological and physical consequences of COVID-19 in patients admitted to the ICU and discharged alive. Results: A total of 22 patients attended the 6-month PICS follow-up clinic following admission to ICU with COVID-19 pneumonitis. The majority of these patients were male and obese. The most common comorbidities were hypertension, diabetes mellitus and ischaemic heart disease. The median ICU length of stay was 21 days (IQR 2-75 days) with a median hospital length of stay of 37 days (IQR 8-130 days). The mean ICU Mobility Scale (IMS) score at the PICS clinic was low at 9.8 (SD 0.4). Only 59% of patients were independent with regard to their activities of daily living (ADLs). 8/14 (57%) of patients had returned to work by 6 months post ICU discharge. Their mean Intensive Care Psychological Assessment Tool (IPAT) score was high at 6.7 (SD 4.6) with a high mean Post-Traumatic Stress Disorder (PTSD) score of 21.1 (SD 17.5). Conclusions: In this single centre prospective cohort study, we found that patients have a high burden of physical and psychological impairment at 6 months following ICU discharge post COVID-19 pneumonitis;in many cases requiring specialist referrals for long-term input. We advocate for increased resources for this much needed follow-up multidisciplinary intervention for an ever-growing population of patients.

Progress of COVID-19 survivors and the impact of the infection on their ability to return to work

P138 Table 1Employment status of COVID-19 dischargesN 138 Essential services 41 (30) Office/admin 37 (27) Healthcare 16 (12) Non essential services 15 (11) Public transport 10 (7) Enforcement 4 (3) Heavy Goods Vehicle driver 3 (2) Carers 2 (1) Unknown 10 (7) ConclusionOur preliminary data suggests significant symptom burden within 6 weeks post discharge after a COVID-19 infection admission, which may impact on the ability of patients to return to work. In the present analysis there was no significant interaction between return-to-work status and covid severity.

Ilive project volunteer study: Delivery of a novel training programme for volunteer coordinators, to underpin development and implementation of hospital palliative care volunteer services

Background: iLIVE is an EU-H2020 funded study to assess end of life care in 13 countries. The iLIVE Volunteer Study (WP3) will evaluate the development, training and implementation of new Hospital Palliative Care Volunteer (HPCV) services for patients in the last month of life, in 5 countries. A European Core Curriculum (ECC) will guide HPCV service development, devised from the results of a recent WP3 Delphi study that identified 54 essential elements for service implementation and training. Aim: Describe a novel training programme developed for volunteer coordinators (VC's) in use of the ECC prior to developing their own HPCV services. Design, methods and approach: An educational psychologist with international experience in training volunteers developed the training programme, based in Experiential Learning Theory (ELT). The programme covered the two sections of the ECC: 1. ECC-A: 10-Step Model for development and implementation of HPCV services into a highly structured context (hospital) 2. ECC-B: training curriculum for HPCV's, including example training sessions and materials Training included plenaries, small group work, guided reflections and participant presentations. Programme evaluation was gained through participant feedback. Results: 10 participants from 5 countries attended the 3 day training programme. Feedback received was positive and highlighted the following themes: •The programme provided valuable opportunity for shared learning •Ongoing reflection via ELT facilitated understanding of the ECC •A focus on training methodology (including sample training materials) highlighted as valuable Conclusions: The programme provided a structured, theory-based approach, which facilitated understanding of the ECC, empowering VC's to develop their own HPCV services, and train volunteers to support patients at the end of life. Recent challenges with COVID-19 will impact design and delivery of these services. iLIVE WP3 will evaluate these HPCV services in 5 countries.

Are public health measures and individualised care compatible in the face of a pandemic? Bereaved relatives' experiences of end-of-life care during a pandemic

Background: Measures put in place to modify the COVID-19 infection rate, may have jeopardised typical end-of-life care values, focused on individual needs and preferences, such as the wish not to die alone. Aim: To understand bereaved relatives' perceptions about the dying experience during the pandemic. Methods: A national online survey, informed by patient and public involvement, was developed and disseminated via social media, public and professional networks (June - September 2020). Validated instruments and purposively designed questions were used to assess experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. Results: Respondents (n=278) had a mean age of 53.4 years;216 (78.0%) were female and 174 (62.6%) were the 'child' to the deceased. Almost 70% of the deceased (mean age 80.5 years;160 (57.6%) female) died in their 'usual place of care' (home n=30 (10.8%);nursing home n=162 (58.3%)). Quantitative survey data and qualitative free-text responses indicated: public health restrictions compounded the distress of 'not knowing' (156, 56.5% were unable to visit during the dying phase of illness);greater confidence and trust in nursing staff compared with medical staff (81.6% vs 57.4%);lack of preparedness (19.9% didn't receive a meaningful explanation about their family members condition);the positive impact of compassionate leadership (176 (75.2%) perceived their family member died in the 'right' place);and unmet emotional needs (30.1% rated emotional support as 'poor'). Being a male respondent (OR 2.9, p=0.03) and being able to visit during the last days of life (OR 2.2, p=0.04) were independently associated with good perceptions of support. Conclusion: Promoting individualised care within an environment of public health restrictions can be enabled by proactive, regular, informative communication;local autonomy and decision-making;and facilitating the ability to be present before death.

Dying in the midst of a pandemic: A qualitative study of bereaved relatives' experiences about their family members deaths

Background: The global COVID-19 pandemic is having a major impact on experiences of dying and death. Family members perceptions about the quality of care for dying individuals and their preparedness for death may influence their psychological adjustment in grief. Aim: To explore relatives' experiences and needs when their family member was dying during the COVID-19 pandemic to help inform current/ future clinical practice and policy. Design: Participants, who had responded to a national on-line COVID- 19 survey, were invited to participate. Semi-structured interviews were conducted (via telephone or video-call) with relatives whose family member died during the pandemic. Data were analysed thematically. Results: 19 participants (12 female, 7 male) reflected experiences of deaths within hospital and care home settings, with and without COVIDrelated illness. Three themes were identified: (1) entering the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic, and (3) the importance of 'saying goodbye' in a pandemic. In the absence of direct physical contact, it was important for families to have a clear understanding of their family member's condition, declining health and detailed, holistic information about their wellbeing. Staying virtually connected with them in the final weeks/days of life and having the opportunity for a final contact before death were fundamentally important. Health and social care professionals were instrumental to providing these aspects of care but faced practical challenges in achieving these. Conclusions: Health and social care professionals have an important role in mitigating the absence of relatives' visits at end of life during a pandemic. Strategies include prioritising virtual connectedness, ensuring holistic, individualised care updates and creating alternative opportunities for relatives to 'say goodbye'.

History of Pain is Associated with Hospitalization and Severe Course of COVID-19 in Children with Sickle Cell Disease

Recurrent pain causes significant morbidity for individuals with sickle cell disease (SCD) and is a marker of mortality. Considering the current pandemic, it's important to understand how COVID-19 impacts individuals with SCD, a medically vulnerable population. We sought to identify factors associated with more severe COVID-19 illness and hospitalization in the SCD population. We established the international SECURE-SCD Registry to collect COVID-19 data in SCD patients. Providers were instructed to report confirmed COVID-19 cases after the disease course was known. Providers reported demographics, prior SCD complications and COVID-19 related hospitalization, severity/management strategies and death. Data were without protected health information. We used multivariable models to estimate the independent effects of age, sex, genotype, SCD-related and non-related comorbidities grouped by organ systems on the outcomes of severe COVID-19 and hospitalization. We defined the pain variable as 0, 1-2 or >2 prior acute care visits (i.e., emergency department visits, hospitalizations) for pain in the last 3 years. As of October 12th, 2020, 366 COVID-19 cases in SCD patients were reported, 41.5% were children and 52.7% were female. Acute pain was the most common presenting symptom of COVID-19 in SCD patients (54.6%), followed by pneumonia (27.0%). Children who had more than 2 acute care visits for pain had a more severe course of COVID-19 (OR=3.964, 95% CI (1.420, 11.065), p=0.03) and required hospitalization (OR=4.641, 95% CI (1.976, 10.900), p=0.006). Children who had 1-2 acute care visits for pain showed no significant association with COVID-19 severity (p=0.73) or hospitalization (p=0.82). In adults, there was no association between with history of frequent SCD pain and COVID outcomes. Pain is the most common presenting symptom of COVID-19 in SCD patients. Further, more than 2 prior acute care visits for pain is associated with severe COVID-19 course and hospitalization in children with SCD and not in adults. This work was supported by Grant 2020079 from the Doris Duke Charitable Foundation.

Early symptom outcomes in hospitalised covid-19 patients

Introduction and Objectives There has been minimal evidence of early symptom outcomes of hospitalised covid-19 patients in the UK. The British Thoracic Society (BTS) has published guidance on recommended follow up for covid-19 patients with radiological pneumonia, but there is general concern about the respiratory and general health of all covid-19 patients. Less is known about early clinical symptoms, including psychological effects, and what interventions may be required to address these. Methods We collected data for all hospital admissions to a district general hospital, that were successfully discharged, which tested positive for COVID-19 by nasal swab PCR between 7th March and 20th July 2020. They were stratified into five protocols of severity. All patients were followed-up 4-6 weeks post discharge with a holistic telephone call questionnaire via our virtual ward. The patients were triaged and managed accordingly with phone advice/sending information packs, and discussion at the weekly virtual MDT for those with significant concerns. Results 312 patients were identified but 55(18%) patients were non-contactable by phone and 18(6%) died post discharge. Of the remaining 239 patients, 167(70%) were considered to have no ongoing issues. Of the 72 patients with issues identified, 43 patients (18%) were found to be more breathless than their baseline, including 6 patients without pneumonia. 42% of ICU discharges and 20% with severe pneumonia were more breathlessness than baseline. 32 patients (13.4%) reported adverse psychological effects, with sleep disturbance in 19 patients (7.9%) and low mood or increased anxiety in 18 patients (7.5%). 41(17.2%) patients' mobility hadn't returned to baseline levels. Only 4 patients (1.3%) had radiological evidence or treated as PE during the admission. Conclusions The majority of covid-19 admissions had no significant issues at 4 to 6 weeks follow-up. Breathlessness was not exclusive to those with radiological pneumonia but the likelihood was increased in ICU admissions and those with severe pneumonia. There was relatively high burden of new psychological symptoms and impaired mobility, which again was most common in ICU admissions. Virtual follow-up is an effective way of identifying those with symptoms who may benefit from early interventions, and enables faster access to specialist support.

P167 Early symptom outcomes in hospitalised covid-19 patients

P167 Figure 1ConclusionsThe majority of covid-19 admissions had no significant issues at 4 to 6 weeks follow-up. Breathlessness was not exclusive to those with radiological pneumonia but the likelihood was increased in ICU admissions and those with severe pneumonia. There was relatively high burden of new psychological symptoms and impaired mobility, which again was most common in ICU admissions. Virtual follow-up is an effective way of identifying those with symptoms who may benefit from early interventions, and enables faster access to specialist support.