Patients’ and family carers’ experience of community-based end of life care during the COVID-19 pandemic in a Scottish health and care partnership

A sharp increase in demand for home-based end of life care in Fife,Scotland during the COVID-19 pandemic, was the catalyst for a mixed methods study examining the reality of such care. This study sought to understand how patients and families experienced care and support at the end of life in their own homes during the pandemic. The qualitative arm of a wider study used narrative methodology. Purposive sampling ensured that current patients and their families and families bereaved during the pandemic were included, as well as representation of people with both cancer and non-cancer illnesses and those receiving different models of care. Semi-structured interviews allowed patients and families to tell their own story and rich data was analysed thematically. Communication and continuity were identified as two core dimen-sions that helped or hindered their experience of professional sup-port and key components of end of life care at home. Inter-agency communication and care planning are central when considering end of life care at home in a post-pandemic landscape, especially if there is to be any chance of addressing inequalities. Practitioner research provides another lens into our understanding of how services are experienced and has the added benefit of developing the communication and interpretation skills of clinicians through qualitative research practice