Title: The impact and implications of Covid-19 on the relational, social, and healthcare experiences of hospice care in the West Midlands
Funder: Economic and Social Research Council

Abstract: The aim of the study is to identify nationally relevant recommendations to mitigate the uneven relational, social and healthcare impacts of Covid-19 upon hospice services for vulnerable service users and those that care for them. The primary objectives (described below 1-4) will seek to identify and act upon quick-win opportunities for the hospice community and so fulfil URI Agile Research and Innovation Response to Covid-19 criteria, "a clear impact pathway that has the potential (within the period of the grant) to deliver a significant contribution to the understanding of, and response to, the Covid-19 pandemic and its impacts". The secondary objectives (5-6) meet the criteria to "gather critical data and resources quickly for future research use". Objective 1: Convene knowledge exchange panel in month 2 to review locally generated grey evidence on the impact of hospice service changes in response to Covid-19 to identify, generate and disseminate cross-cutting recommendations for policy and practice, and update them at two-month intervals throughout the study. Objective 2: Conduct in-depth interviews with people with experiences of hospice care (from users to providers) during Covid-19 to contextualise the lived uneven relational, social and healthcare impacts of Covid-19. Objective 3: Convene Knowledge Translation Workshops (KTW) at two-month intervals to identify opportunities to better deliver hospice services and support to those with life-limiting conditions and those that care for them. Objective 4: Use our local and national networks to disseminate findings and recommendations and engage political leaders and civil society groups. Objective 5: Submit the de-identified interview transcripts for storage at the UK Data Service. Objective 6: Make all reports (Evidence Notes, Cohort, and Translation) publicly available on Marie Curie website.

Lay abstract: People with life limiting conditions are some of the most vulnerable to Covid-19. Until recently, hospice care has largely been associated with in-person, specialist, and building-centric support. Covid-19 has been a catalyst to its redesign, bringing rapid and on-going changes that are affecting every aspect of hospice care and support for the dying. However, we do not know how effective these changes to hospice services have been, how they have affected experiences of providing or receiving hospice care and support, and if these changes may have been experienced unevenly. The study's aim is to identify nationally relevant recommendations to mitigate adverse relational, social and healthcare impacts of Covid-19 upon hospice services for vulnerable service users and those that care for them. The West Midlands region provides an ideal context in which to explore these issues, with its diverse community and broad demographic population served by 22 hospices. We will collate and provide an expert review of the grey evidence on Covid-19-associated service redesign that hospices in the region are producing. We will also produce in-depth understanding of the experiences of those involved in receiving and providing hospice care during the pandemic, and the determinants that are affecting this. We will use this evidence to quickly develop recommendations for local and national policy and practice. We will draw on our existing networks and collaborate with Marie Curie to develop a series of reports, delivered and disseminated throughout the project, to hospice service users, stakeholders, political leaders and civil society groups.

Research activity codes: 7.2 END OF LIFE CARE;8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: GENERIC HEALTH RELEVANCE;INFECTION