Evidence map›Paper›PMID 39243054›Full record

ArticleResearch involvement and engagement2024

Motivations of family advisors in engaging in research to improve a palliative approach to care for persons living with dementia: an interpretive descriptive study.

Stephanie Lucchese, Marie-Lee Yous, Julia Kruizinga, Shirin Vellani, Vanessa Maradiaga Rivas, Bianca Tétrault, Pam Holliday, Carmel Geoghegan, Danielle Just, Tamara Sussman and 2 more

Abstract read
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In one paragraph

Article in Research involvement and engagement, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. 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

12 authors.

Stephanie LuccheseFaculty of Health Sciences, School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON, L8S 3Z1, Canada.
Marie-Lee YousFaculty of Health Sciences, School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON, L8S 3Z1, Canada.
Julia KruizingaFaculty of Health Sciences, School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON, L8S 3Z1, Canada.
Shirin VellaniLawrence S. Bloomberg, Faculty of Nursing, University of Toronto, 155 College Street, Toronto, ON, M5T 1P8, Canada.
Vanessa Maradiaga RivasFaculty of Health Sciences, School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON, L8S 3Z1, Canada.
Bianca TétraultFaculty of Arts, School of Social Work, McGill University, 550 Sherbrooke Ouest H3A B9, Montreal, QC, H3A 1B9, Canada.
Pam HollidayFaculty of Health Sciences, School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON, L8S 3Z1, Canada.
Carmel GeogheganDementia Ireland Keeping the Spotlight on Dementia and End of Life - Oughterard, Co. Galway, Ireland.
Danielle JustLawrence S. Bloomberg, Faculty of Nursing, University of Toronto, 155 College Street, Toronto, ON, M5T 1P8, Canada.
Tamara SussmanFaculty of Arts, School of Social Work, McGill University, 550 Sherbrooke Ouest H3A B9, Montreal, QC, H3A 1B9, Canada.
Rebecca GanannFaculty of Health Sciences, School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON, L8S 3Z1, Canada.
Sharon KaasalainenFaculty of Health Sciences, School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON, L8S 3Z1, Canada. kaasal@mcmaster.ca.

Funding

CIHR 161462
6 · The paper itself

Abstract

backgroundA Strategic Guiding Council (SGC) was created within a Family Carer Decisions Support study, to engage family carers of persons with advanced dementia as advisors to inform the design and implementation of the study. The SGC consists of an international group of family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, and the Czech Republic. There are limited studies that have explored the integration of Patient and Public Involvement (PPI) in dementia research, end-of-life care and long-term care. Therefore, this study explores PPI engagement in health research with family carers to understand further their interest in being involved in the SCG within the FCDS intervention which is focused on supporting caregivers to make decisions about end-of-life care for residents with advanced dementia.

methodsThis study utilized an interpretive descriptive design and explored the motivations of ten family advisors from Canada, the Republic of Ireland, the United Kingdom, and the Netherlands in being part of the SGC. Semi-structured interviews were conducted by phone or videoconferencing and were recorded, transcribed, and analyzed using thematic analysis.

resultsThree themes generated from the findings of the study were (1) engaging in reciprocal learning; (2) using lived experience to support other family carers; and (3) creating a collective momentum for advocacy and change.

conclusionsFamily carers motivations to being part of the SCG was driven by their intent to help carers navigate the health system and to create a psychosocial support system for other carers experiencing end-of-life with their loved ones. Being part of the SCG provided a benefit to family carers which provided a venue for them to contribute meaningful information from their experience, learn from other health professionals, research and other advisors and an avenue for advocacy work to improve access to end-of-life care supports through education. To our knowledge, this is the first study that explores the motivations of an international group of family advisors' engagement in health research to promote integration of a palliative approach to dementia care in long-term care homes. This study further contributes to the literature from an international perspective the importance of PPI in research. Further research is warranted that explores PPI in research to improve access to end-of-life supports.

Indexed as

DementiaEnd-of-life careLong-term carePalliative carePatient oriented research

Identifiers

PMID39243054
PMCPMC11380201

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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.