Rapid evaluation of the care home response to the need for palliative and end-of-life care during the COVID-19 pandemic: integration, communication and workforce resilience (CovPall_CareHome)

Background: COVID-19 has had a devastating impact on care homes, their residents and families, and staff. Over 20,000 care home residents in England have died from COVID-19 to date. Many more have experienced symptoms and distress. Palliative care is an essential component of the pandemic response. However, there has been limited examination of palliative and end-of-life care provision in English care homes during COVID-19, or strategies to improve this during subsequent pandemic peaks. Aim: To examine the response of care homes in England to meet the rapidly increasing need for palliative and end-of-life care for residents during the COVID-19 pandemic, and make recommendations for policy. Objectives: 1. To describe the response of care homes to palliative and end of life care needs during the COVID-19 pandemic, and the experiences, preparedness and impact on the workforce. 2. To explore in-depth the challenges and facilitators to providing palliative and end of life care in care homes during the pandemic. 3. To make recommendations for policy and develop guidance that helps to improve and sustain palliative and end of life care during current and future pandemic peaks. Methods: Rapid, multicentre observational study, comprising two Work Packages (WPs): WP1. On-line rapid survey, to map care home provision of palliative and end-of-life care. 400 care homes in England will be identified through established networks (Wave 1), augmented with purposive sampling to capture care homes with and without onsite nursing provision, geographical, socio-economic and ethnic diversity, and areas most affected by COVID-19 (Wave 2). Structured data and free text will include care home characteristics; confirmed/suspected COVID-19 positive residents; use of guidance on symptom control, end-of-life care, comprehensive assessment, Advance Care Planning, anticipatory prescribing, communication; service innovations during COVID-19; integration with healthcare services; workforce wellbeing, retention; preparedness to provide palliative and end-of-life care; and facilitators and challenges to palliative care provision. The primary outcome will be preparedness to provide palliative and end-of-life care. Regression models will examine the factors independently associated with the outcome. WP2. In-depth case studies to explore challenges and facilitators to providing palliative and end-of-life care for residents during the pandemic. 20-24 care homes, purposively selected from WP1 based on the findings. On-line or telephone qualitative interviews with care home managers/clinical leads will be conducted. WP1 data will inform the questions and analysis, using qualitative directed content analysis. Data triangulation will synthesise WP1 and WP2 findings, focusing on the challenges and facilitators to providing palliative and end-of-life care in care homes, and development of policies to improve and sustain this. Timelines: This 12-month project will deliver reports in months 4 and 10, and a stakeholder workshop in month 11. Impact and dissemination: The research is designed for short- and medium-term policy impact, through care home, Patient and Public Involvement (PPI), and policy collaboration. An interim analysis will inform short-term policy during winter 2020/2021. Reports will be accompanied by PPI summaries, evidence summaries and guidance for front-line staff. Academic papers will be published as preprints to ensure timely dissemination.