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This project was a scoping literature review, to understand what research had already been done on this topic. It was done on a shoestring, with a small grant from my client, the Centre for Applied Research in Health at the University of Huddersfield. I worked closely with Dr Mary Turner, who leads the Special Interest Group in Palliative and End of Life Care.
This project was interesting for 3 reasons
Firstly, I was really surprised at how little research had been done that focused on patient and family carer experience in the context of integrated care at end of life. I know we were focused on a specific context - community care - but I thought there would be more.
Secondly, what we found was really interesting. The role of family caregivers at end of life is crucial, but their experience and needs are often ignored. At end of life the health and care system can seem fragmented and very confusing, which adds to an already stressful time for patients and families. Communication is a key factor, both between professionals and families and between different groups and teams of professionals. If services are to meet the aspirations of the NHS long-term plan for ageing well, ways must be found for services to be flexible and responsive to the needs of families and carers.
Lastly, it was a lesson in using what you have as far as public involvement goes. The patient and carer voice in this project helped to guide the focus of the literature review and came from three main sources: a moving account from a recently bereaved family carer, of her experience of community health and care services when she cared for, and lost, both parents one after the other; stories of when things go wrong at end of life from patient advocates; and finally the viewpoint of the South Asian and Afro Caribbean communities, from two local reviews of end of life care. I'm sure people might argue that we should have done more to include the public voice (and they'd be right) but we were a brand new research team, with a minimal budget and very little time (just a few months). So we focused on what we already knew, the information that already existed in the local health and care system. We invited Susan (that isn't her real name) to share her experience as part of a workshop to set priorities for the project. Her account of two end of life caring experiences, one as good as it could be and one where things really didn't go to plan, were incredible and really illustrated many of the points that later formed the core priorities of the project.
We have written up this project as a paper and and it is currently under review for publication. Here is the plain language summary.
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Photo by National Cancer Institute on Unsplash
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