Lived experiences of end-of-life care at home in the UK: a scoping review of qualitative research

Abstract

<b>Background</b> Home is the preferred place of care and death for most people with advanced illness. <b>Aim</b> To examine and describe the published qualitative literature on the lived experiences of dying at home, to characterise the participants and their contexts and to identify key gaps, with a view to informing future research. <b>Design and Setting</b> A scoping literature review in accordance with the PRISMA-ScR guideline. <b>Method</b> The online databases CINAHL and MEDLINE were searched with relevant MeSH terms and keywords to identify primary qualitative research published between 2010 and 2022, exploring the lived experience of patients, families and/or unpaid carers in the United Kingdom. <b>Results</b> 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 unpaid carers and only one study interviewed a dying person. Where specified, the majority of experiences related to deaths from cancer, many with specialist palliative care team involvement. Included papers yielded a breadth of diverse findings, with the most common subject themes relating to the availability and quality of care and support for families and carers. <b>Conclusion</b> There is limited published evidence exploring lived experiences of end-of-life care at home and this constrains the extent to which community services can be evidence-informed in their design and delivery. More research is needed to examine the first-hand experiences of people who are dying at home, particularly for those with non-cancer conditions and where specialist services are not involved.