Evidence map›Paper›PMID 27388766›Full record

ArticleBMC palliative care2016

An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes.

Geena Saini, Elizabeth L Sampson, Sarah Davis, Nuriye Kupeli, Jane Harrington, Gerard Leavey, Irwin Nazareth, Louise Jones, Kirsten J Moore

Abstract readMulticenter Study
PubMed Full text at PMC Publisher
In one paragraph

Article in BMC palliative care, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 5 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
26citing papers in PubMed, 5 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

26 citing papers in PubMed, 5 syntheses or guidelines pooled it.

  1. Pooled it
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  3. Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions.Health expectations : an international journal of public participation in health care and health policy · 2021
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  18. Family Members' Experience of Discussions on End-of-Life Care in Nursing Homes in Japan: A Qualitative Descriptive Study of Family Members' Narratives.Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association · 2020
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Geena SainiCentre for Mental Health, Maya House, 134-138 Borough High Street, London, SE1 1LB, UK.
Elizabeth L SampsonMarie Curie Palliative Care Research Department (MCPCRD), Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
Sarah DavisMarie Curie Palliative Care Research Department (MCPCRD), Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
Nuriye KupeliMarie Curie Palliative Care Research Department (MCPCRD), Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
Jane HarringtonMarie Curie Palliative Care Research Department (MCPCRD), Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
Gerard LeaveyBamford Centre for Mental Health & Wellbeing, University of Ulster, Magee Campus, Northland Road, Derry Londonderry, BT48 7JL, UK.
Irwin NazarethDepartment of Primary Care and Population Health, UCL Royal Free Site, Rowland Hill Street, London, NW3, UK.
Louise JonesMarie Curie Palliative Care Research Department (MCPCRD), Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
Kirsten J MooreMarie Curie Palliative Care Research Department (MCPCRD), Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK. kirsten.moore@ucl.ac.uk.

Funding

Marie Curie MCCC-FPR-11-U
6 · The paper itself

Abstract

backgroundMost people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice.

methodsAn ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals.

resultsFour major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end-of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions.

conclusionsThe Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.

Indexed as

Nursing HomesTerminal CareAdvance Care PlanningCaregiversDementiaEmpathyFamily HealthGriefHealth EducationHealth Knowledge, Attitudes, PracticeHealth PersonnelHumansInterview, PsychologicalMedical RecordsPatient Care TeamProfessional-Family RelationsAdvanced dementiaEnd-of-life discussionsEthnographyFamily carersNursing homes

Identifiers

PMID27388766
PMCPMC4936120

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.