ArticleBMJ open2023
How can the priorities of older, frail patients and their carers be used to inform policy and practice at the end of life? Insights from qualitative research across multiple settings.
Article in BMJ open, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
2 citing papers in PubMed.
- Family carer experiences of hospice care at home: Qualitative findings from a mixed methods realist evaluation.Palliative medicine · 2023Article
- Person-Centred Palliative Home Care From a Patient and Family Carer Perspective - A Qualitative Interpretive Meta Synthesis.Global qualitative nursing researchArticle
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesThe paper reports on experiences from older patients and their carers of current provision of end-of-life care in England. It draws on data from a study that sought to explore the extent to which national policy for end-of-life care in England was aligned with the aspirations of stakeholders. Specifically, the study explored the balance between clinical healthcare vs social and relational care asking how this was aligned to patient priorities at this time of life. Here, we examine the extent to which the patient voice is attended to when health and social care services are delivered to older people and consider how the experiences of patients and carers could be used to improve outcomes.
designThe work draws on data collected as part of a realist informed study using a case study approach to gather data.
settingClinical Commissioning Groups were used as the boundaries of the three case studies and within these geographical areas data was collected in hospitals, care homes, hospices and patient homes.
participantsThis paper reports on in-depth interviews conducted with 21 patients at the end of life and 22 relatives/carers (n=43).
resultsWhile the medical care patients received was generally praised, it was reported that relational care, particularly in respect to adult social care received at home, was fragmented and of varying quality. Relational and social support were key to the patient and carer experience yet appeared to be hard to access.
conclusionThe work highlights the misalignment between the availability of different types of care at the end of life and patient priorities. More attention should be paid to the voice of older patients and their carers, drawing on their experiences to influence the way policy is translated into practice.
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