Conversations about Death and Dying with Older People: An Ethnographic Study in Nursing Homes.
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SUBMITTER: Alftberg A
PROVIDER: S-EPMC6023469 | biostudies-literature | 2018 Jun
REPOSITORIES: biostudies-literature
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Conversations about Death and Dying with Older People: An Ethnographic Study in Nursing Homes.
Alftberg Åsa Å Ahlström Gerd G Nilsen Per P Behm Lina L Sandgren Anna A Benzein Eva E Wallerstedt Birgitta B Rasmussen Birgit H BH
Healthcare (Basel, Switzerland) 20180614 2
Nursing homes are often places where older persons “come to die.” Despite this, death and dying are seldom articulated or talked about. The aim of this study was to explore assistant nurses’ experiences of conversations about death and dying with nursing home residents. This study is part of an implementation project through a knowledge-based educational intervention based on palliative care principles. An ethnographic study design was applied in seven nursing homes, where eigh ...[more]
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Project description:ObjectivesTo identify and synthesise qualitative research from 2001 investigating older people's (65+ years) experiences of dying in nursing and care homes.Methods and outcomesEight electronic databases (AMED, ASSIA, CINAHL Plus, Embase, HMIC, Medline, PsychINFO and Scopus) from 2001 to July 2017 were searched. Studies were included if they were qualitative, primary research and described the experiences of dying in nursing or care homes from the perspectives of the older people themselves, their families or staff. Study quality assessment was undertaken to systematically assess methodological quality, but no studies were excluded as a result.Results1305 articles were identified. Nine met the inclusion criteria. North American studies dominated. Most used a mixture of observations and interviews. All the included studies highlighted the physical discomfort of dying, with many older people experiencing potentially avoidable symptoms if care were to be improved. Negative psychosocial experiences such as loneliness and depression were also often described in addition to limited support with spiritual needs.ConclusionsMore qualitative research giving a holistic understanding of older people's experiences of dying in residential care homes is needed. Undertaking research on this topic is challenging and requires great sensitivity, but the dearth of qualitative research from the perspectives of those most closely involved in older people's deaths hampers service improvement.
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Project description:BackgroundCare homes provide long term care for older people. Countries with standardised approaches to residents' assessment, care planning and review (known as minimum data sets (MDS)) use the aggregate data to guide resource allocation, monitor quality, and for research. Less is known about how an MDS affects how staff assess, provide and review residents' everyday care. The review aimed to develop a theory-driven understanding of how care home staff can effectively implement and use MDS to plan and deliver care for residents.MethodsThe realist review was organised according to RAMESES (Realist And Meta-narrative Evidence Synthesis: and Evolving Standards) guidelines. There were three overlapping stages: 1) defining the scope of the review and theory development on the use of minimum data set 2) testing and refining candidate programme theories through iterative literature searches and stakeholders' consultations as well as discussion among the research team; and 3) data synthesis from stages 1 and 2. The following databases were used MEDLINE via OVID, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), ASSIA [Applied Social Sciences Citation Index and Abstracts]) and sources of grey literature.ResultsFifty-one papers informed the development of three key interlinked theoretical propositions: motivation (mandates and incentives for Minimum Data Set completion); frontline staff monitoring (when Minimum Data Set completion is built into the working practices of the care home); and embedded recording systems (Minimum Data Set recording system is integral to collecting residents' data). By valuing the contributions of staff and building on existing ways of working, the uptake and use of an MDS could enable all staff to learn with and from each other about what is important for residents' care CONCLUSIONS: Minimum Data Sets provides commissioners service providers and researchers with standardised information useful for commissioning planning and analysis. For it to be equally useful for care home staff it requires key activities that address the staff experiences of care, their work with others and the use of digital technology.RegistrationPROSPERO registration number CRD42020171323.
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Project description:BackgroundDisturbed sleep among people living with dementia in nursing homes is widespread and is associated with diseases and all-cause mortality. This study examined the sleep of people living with dementia from their perspectives in nursing homes and that of the nurses who care for people living with dementia.MethodsA qualitative cross-sectional study was conducted. A total of 15 people living with dementia and 15 nurses in 11 German nursing homes were enrolled in this study. Data was collected between February and August 2021 through semistructured interviews, which were audio recorded and transcribed. Thematic analyses were performed by three independent researchers. Thematic mind maps and controversial findings were discussed with the Research Working Group of People with Dementia of the German Alzheimer Association.ResultsThematic analysis identified five overarching themes from the nursing home participants regarding sleep patterns: (1) characteristics of good sleep, (2) characteristics of bad sleep, (3) personal influences of people living with dementia on sleep, (4) environmental factors on sleep, and (5) sleep strategies of people living with dementia. Analysis also identified five overarching themes from the nurses participants: (1) characteristics of good sleep, (2) characteristics of bad sleep, (3) personal influences on sleep, (4) environmental factors on sleep, and (5) interventions for sleep promotion.ConclusionsThe thematic analyses demonstrated that the perspectives of people living with dementia and nurses indicate the need to give more consideration to psychosocial factors and individual aspects of sleep in clinical practice. The results could also be helpful for the development of targeted assessment instruments and complex non-pharmacological interventions to promote sleep.
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