Title: ICES C-19 Informal Carers in England and Scotland during the COVID-19 pandemic: experiences of caring for the dying at home
Funder: Marie Curie

Abstract: Background: Caring for someone who is dying at home creates physical, psychological, social, spiritual, financial and informational challenges (Carduff et al 2014, Reigada et al 2015, Ling et al 2017). Research shows that early support for carers can reduce pressures (Aoun et al., 2015), increase competence, improve coping and satisfaction and decrease stress (Harrop et al., 2014). Since the COVID-19 pandemic, more people have died at home receiving care at the end-of-life from relative. It is necessary to understand the experiences of care and identify where support may have been restricted as a result of lockdown or restrictions to services in order to effectively resource future palliative care services and policy implications and ultimately provide better end-of- life care for patients and their carers. Methods: A scoping literature review will identify the experience of informal/family caring of people approaching end-of-life during the COVID-19 pandemic followed by interviews with bereaved carers (n=25-30) from England and Scotland. Participants will be asked to complete the ICECAP-CMP (Canaway et al 2016), a questionnaire designed to capture the benefits of end-of-life care from the perspectives of bereaved close persons. They will be asked about communication, support and coping whilst verbalising their thoughts in a think aloud interview in order to explore and understand their experiences of care and identify unmet needs. Analysis: Data will be thematically analysed to draw comparisons firstly, between the experiences for carers in England and Scotland and secondly, comparisons within Scotland between the Marie Curie Nursing Service and the Community Palliative Care Services. The ICEACP-CPM enables a value to be calculated quantitatively to represent quality of care to further compare across the dataset. Dissemination: Published reports and policy briefings will be prepared to disseminate findings and provide policy recommendations in addition to press releases and a call for parliamentary debate.

Lay abstract: The COVID-19 pandemic has put an enormous amount of pressure on people caring for the dying in their own homes. Although we may not understand the reasons why, we know that more people than ever before are deciding to stay at home at the end-of-life. Whilst people with terminal disease are likely to benefit from palliative care, we know that some do not access hospice or palliative care nursing services, leaving end-of-life care to informal carers. This research aims to explore the experience of caring for someone dying at home from the perspectives of bereaved carers during the pandemic when social distancing and restrictions to some services were in place. We will explore how the pandemic impacted on the support carers received from healthcare professionals and identify any unmet needs in order to learn how to better support carers in the future. The study will involve reviewing the literature around the experience of informal/family caring of people approaching end-of-life during the COVID-19 pandemic followed by interviews with bereaved carers. A sample of bereaved relatives (25-30) identified via Marie Curie Hospices and Nursing Service in England and Scotland will be recruited. In virtual interviews they will be will be asked about their experiences of providing care at home during the pandemic, in particular about the quality of communication, emotional and practical support, preparations and coping. Data will be analysed for themes that can inform policy briefings showing comparisons between experiences in England and Scotland and a comparison within Scotland between the two palliative care services. This research is timely given the unprecedented nature of the pandemic and the invisible impact within individuals’ homes. Findings will inform resource allocation and policy and ultimately improve end-of-life care for patients dying at home and their carers.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE