Evidence map›Paper›PMID 36419147›Full record

ArticleBMC palliative care2022

Just and inclusive end-of-life decision-making for long-term care home residents with dementia: a qualitative study protocol.

N Sutherland, O St Amant, S Dupuis, P Kontos, E Wiersma, M Brennan

Abstract read
In one paragraph

Article in BMC palliative care, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–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

2 citing papers in PubMed.

  1. Article
  2. Article
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

6 authors.

N SutherlandSchool of Nursing, Lakehead University, Centre for Education and Research on Aging and Health, Lakehead University, 955 Oliver Road, Thunder Bay, Ontario, P7B 5E1, Canada. nsutherl@lakeheadu.ca.ORCID http://orcid.org/0000-0003-2025-0130
O St AmantDaphne Cockwell School of Nursing, Toronto Metropolitan University, 350 Victoria Street, Toronto, Ontario, M5B 2K3, Canada.
S DupuisDepartment of Recreation and Leisure Studies, University of Waterloo, 200 University Avenue, Waterloo, Ontario, N2L 3G1, Canada.
P KontosKITE Research Institute, Toronto Rehabilitation Institute - University Health Network, Dalla Lana School of Public Health, University of Toronto, 550 University Avenue, Toronto, Ontario, M5G 2A2, Canada.
E WiersmaDepartment of Health Sciences, Lakehead University, Centre for Education and Research on Aging and Health, Lakehead University, 955 Oliver Road, Thunder Bay, Ontario, P7B 5E1, Canada.
M BrennanBora Laskin Faculty of Law, Lakehead University, 955 Oliver Road, Thunder Bay, Ontario, P7B 5E1, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundMany people living with dementia eventually require care services and spend the remainder of their lives in long-term care (LTC) homes. Yet, many residents with dementia do not receive coordinated, quality palliative care. The stigma associated with dementia leads to an assumption that people living in the advanced stages of dementia are unable to express their end-of-life needs. As a result, people with dementia have fewer choices and limited access to palliative care. The purpose of this paper is to describe the protocol for a qualitative study that explores end-of-life decision-making processes for LTC home residents with dementia. METHODS/

designThis study is informed by two theoretical concepts. First, it draws on a relational model of citizenship. The model recognizes the pre-reflective dimensions of agency as fundamental to being human (irrespective of cognitive impairment) and thereby necessitates that we cultivate an environment that supports these dimensions. This study also draws from Smith's critical feminist lens to foreground the influence of gender relations in decision-making processes towards palliative care goals for people with dementia and reveal the discursive mediums of power that legitimize and sanction social relations. This study employs a critical ethnographic methodology. Through data collection strategies of interview, observation, and document review, this study examines decision-making for LTC home residents with dementia and their paid (LTC home workers) and unpaid (family members) care partners. DISCUSSION: This research will expose the embedded structures and organizational factors that shape relationships and interactions in decision-making. This study may reveal new ways to promote equitable decision-making towards palliative care goals for LTC home residents with dementia and their care partners and help to improve their access to palliative care.

Indexed as

DementiaHospice and Palliative Care NursingDeathHumansLong-Term CareQualitative ResearchEnd-of-life decision-makingLong-term care homesPalliative carePeople living with dementia

Identifiers

PMID36419147
PMCPMC9684772

What OpenQuestion holds

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Registered trials

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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.