Background Home is the preferred place of care and death for most people with advanced illness and the proportion of people dying at home has risen sharply during the COVID-19 pandemic. However, little is known about the reality of end-of-life care in this setting for patients, their families and unpaid carers. We aimed to examine the published literature on these lived experiences.
Methods A scoping review was undertaken in accordance with the PRISMA-ScR checklist. All primary qualitative research papers published in the English language between 2010 and 2022 and exploring the lived experience of patients, families and/or unpaid carers in the United Kingdom were eligible for inclusion. The online databases CINAHL and MEDLINE were searched with relevant MeSH terms and keywords.
Results In total, 462 papers were screened, 58 underwent full text review and 13 studies were retained in the final set. All studies explored the experience of bereaved family and/or carers and only one study interviewed a dying patient. Where specified, the majority of experiences related to deaths from cancer, many with specialist palliative team involvement. No studies considered end-of-life care at home during the COVID-19 pandemic. The included papers yielded a breadth of diverse findings but the most common subject themes related to the availability and quality of care and support for families and carers.
Conclusion Currently, there is limited published evidence exploring the lived experience of those receiving and supporting end-of-life care at home. More research is needed to examine the first-hand experience of patients and to understand better the reality of deaths at home due to non-cancer conditions and where specialist palliative care services are not involved.
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