Half a million people die in England each year, and by 2040 that number will rise by 25.4%, yet no one knows how good the care is for those dying at home or in nursing homes. This matters because poor care at the very end of life causes distress for the dying person, worse bereavement outcomes for families, and costly hospital admissions. Two-thirds of people say they want to die at home, but current evaluations of care quality focus almost entirely on hospitals and hospices, leaving community deaths—the majority—unmeasured. The project also targets underserved communities, including those in deprived areas and from diverse ethnic backgrounds, who are routinely excluded from post-bereavement surveys. If successful, the research will produce the first national map of care quality for community deaths, based on a survey of 7,500 bereaved family members. It will also generate a practical framework for making future evaluations more inclusive, alongside public resources such as a short animation and policy recommendations. These outputs could help clinicians, service providers, and policymakers identify where care falls short and target improvements to the systems that support dying people and their families outside hospital settings.
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Background Each year half a million people die in England. By 2040, annual deaths are projected to rise by 25.4%. Approximately, two-thirds of individuals express preference for home death. Death is a seminal event and poor care causes individual distress, worse bereavement outcomes, and costly hospital admissions. Despite this, we do not know what the current quality of care is like for those who are dying in their own homes or in nursing homes i.e., 'community deaths'. Aims Generate evidence to underpin improvements in care for the dying (last days of life) in the community within England, from the perspective of bereaved family and friends. Develop and incorporate methodology to increase inclusivity for specific underserved communities (living in areas of high socio-economic deprivation and/or diverse ethnicity). Objectives Understand what strategies work, why, for whom and in what circumstances, to enhance participation within post-bereavement surveys, for selected underserved communities. Evaluate quality of care and support for the dying using a post-bereavement survey integrating objective 1 findings to widen inclusivity. Explore in-depth experiences of care for the dying, and identify potential mechanisms for improvement, within selected underserved communities. Produce public-facing resources and outputs to help clinicians, researchers and policymakers address inequities in quality of care for the dying and broaden inclusiveness within evaluations. Methods A mixed-methods study, using participatory, co-design principles including partnering bi-lingual Community Research Link Workers (CRLW) (trained non-academic researchers from community organisations). The four Work Packages (WPs) are: WP1: Realist synthesis with key stakeholder workshops Synthesise evidence and conduct two workshops to understand how, why, for whom and in what circumstances do different strategies work to increase participation in post-bereavement surveys. WP2: National survey of bereaved family and friends Conduct an inclusive, national survey, informed by WP1 findings, using validated tools assessing quality of care and family support in the last days of life. Working with the Office of National Statistics, 7500 next-of-kin to those on the deaths registration database, will be contacted >= 3 months after death. Multi-modal approaches for completion are proposed e.g., postal survey, telephone, video or online completion with support from interpreter/CRLW. WP3: In-depth qualitative research with underserved communities Undertake convergent, parallel interviews (n=40), in partnership with CRLW, exploring experiences of care for the dying and potential mechanisms for improvement. WP4: Results synthesis and co-design workshops Integrate WP2/WP3 findings, producing a convergence coding matrix and developing meta-themes. Conduct four workshops with PPI, CRLW, community healthcare professionals and co-design experts to develop accessible, inclusive outputs on key research findings. Patient and public involvement (PPI) is central to the study concept, informing study design e.g., including family needs, and ways to address cultural relevance and sensitivity. Ongoing input will inform material content, engagement methods and outputs. Outputs National survey report (including infographic) mapping current quality of care for the dying. Methodological framework about inclusive methods for evaluating the dying phase. Short animation raising public awareness about 'what matters most' at the very end-of-life. Practical recommendations for policy makers and service providers about inclusive evaluations and care improvement.
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