Evidence map›Paper›PMID 37871184›Full record

ArticleDementia (London, England)2023

Use of adapted or modified methods with people with dementia in research: A scoping review.

Emma Conway, Ellen MacEachen, Laura Middleton, Carrie McAiney

Abstract readScoping Review
In one paragraph

Article in Dementia (London, England), 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed, 1 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

10 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Involving People With Dementia in Research: Contributions, Barriers and Evaluation From a Meta-Synthesis and Qualitative Interview Study.Health expectations : an international journal of public participation in health care and health policy · 2026
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  9. Methods for Involving People With Dementia in Health Policy and Guideline Development: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2025
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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

4 authors.

Emma ConwaySchool of Public Health Sciences, University of Waterloo, Canada.ORCID 0000-0003-2616-7290
Ellen MacEachenSchool of Public Health Sciences, University of Waterloo, Canada.ORCID 0000-0001-6477-7650
Laura MiddletonKinesiology and Health Sciences, University of Waterloo, Canada.ORCID 0000-0001-8624-3123
Carrie McAineySchool of Public Health Sciences, University of Waterloo, Canada.ORCID 0000-0002-7864-344X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

People with dementia are excluded from research due to methodological challenges, stigma, and discrimination. Including perspectives of people with dementia across a spectrum of abilities is essential to understanding their perspectives and experiences. Engaging people living with dementia in qualitative research can require adaptation of methods.Qualitative research is typically considered when researchers seek to understand the perspectives, lived experiences, or opinions of individuals' social reality. This scoping review explores current use of adapted methods with people with dementia in qualitative research, including methods used and impacts on the engagement as it relates to meeting accessibility needs. This review considered rationales for adaptations provided by authors, particularly whether authors identified a human rights or justice rationale for adapting methods to promote accessibility and engagement.This review began with a search of primary studies using qualitative research methods published in English in OECD countries from 2017 to 2022. Two reviewers screened titles and abstracts for inclusion. Full texts were reviewed, and data from included studies were extracted using a pre-determined chart. Content analysis of rationales was conducted and reviewed by all authors. Studies were assessed for findings related to impacts of adapted methods.Twenty-eight studies met inclusion criteria. Adaptations to qualitative research methods ranged from minor changes, such as maintaining a familiar interviewer, to more extensive novel methods such as photo-elicitation techniques. Twenty-seven studies provided a rationale for adapting their methods. No studies assessed impacts of their methodology on engagement or accessibility. Five studies observed that their methodology supported engagement.This review helps understand the breadth of adaptations that researchers have made to qualitative research methods to include people with dementia in research. Research is needed to explore adaptations and their impact on engagement of persons with dementia with a range of abilities and backgrounds.

Indexed as

DementiaHumansQualitative Researchaccessibilityadapted research methodsdementiaengagementhuman rightsqualitative research

Identifiers

PMID37871184
PMCPMC10644684

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.