Yes / The majority of people with dementia in the UK die in care homes. The quality of end of life care in
these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and
outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from
the perspective of health and social care providers.
Method: The design of the study was qualitative which involved purposive sampling of health care professionals to
undertake interactive interviews within a realist framework. Interviews were completed between September 2012
and October 2013 and were thematically analysed and then conceptualised according to context, mechanisms and
outcomes. The settings were private care homes and services provided by the National Health Service including
memory clinics, mental health and commissioning services in London, United Kingdom. The participants included
14 health and social care professionals including health care assistants, care home managers, commissioners for
older adults’ services and nursing staff.
Results: Good palliative care for people with advanced dementia is underpinned by the prioritisation of
psychosocial and spiritual care, developing relationships with family carers, addressing physical needs including
symptom management and continuous, integrated care provided by a multidisciplinary team. Contextual factors
that detract from good end of life care included: an emphasis on financial efficiency over person-centred care; a
complex health and social care system, societal and family attitudes towards staff; staff training and experience,
governance and bureaucratisation; complexity of dementia; advance care planning and staff characteristics.
Mechanisms that influence the quality of end of life care include: level of health care professionals’ confidence,
family uncertainty about end of life care, resources for improving end of life care and supporting families, and
uncertainty about whether dementia specific palliative care is required.
Conclusions: Contextual factors regarding the care home environment may be obdurate and tend to negatively
impact on the quality of end of life dementia care. Local level mechanisms may be more amenable to
improvement. However, systemic changes to the care home environment are necessary to promote consistent,
equitable and sustainable high quality end of life dementia care across the UK care home sector
Identifer | oai:union.ndltd.org:BRADFORD/oai:bradscholars.brad.ac.uk:10454/10406 |
Date | 03 March 2016 |
Creators | Kupeli, N., Leavey, G., Moore, K., Harrington, J., Lord, Kathryn, King, M., Nazareth, I., Sampson, E.L., Jones, L. |
Source Sets | Bradford Scholars |
Language | English |
Detected Language | English |
Type | Article, Published version |
Rights | © 2016 The Authors. Open Access, published by BioMed Central. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
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