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

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 qualit...

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Publicado en:Dementia (14713012) Vol. 22; no. 8; pp. 1994 - 2024
Autores principales: Conway, Emma, MacEachen, Ellen, Middleton, Laura, McAiney, Carrie
Formato: research systematic review tables/charts Journal Article
Publicado: Sage Publications Inc. Nov2023
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Nov2023
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      pub: Sage Publications Inc.
      place: Thousand Oaks, California
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        atl: Use of adapted or modified methods with people with dementia in research: A scoping review.
      aug:
        au:
          Conway, Emma
          MacEachen, Ellen
          Middleton, Laura
          McAiney, Carrie
        affil: School of Public Health Sciences, 8430 University of Waterloo, Canada
      sug:
        subj:
          Dementia Patients
          Consumer Participation
          Qualitative Studies
          Research Subject Recruitment
          Human
          Systematic Review
          Scoping Review
          PubMed
          CINAHL Database
          Psycinfo
          Data Collection Methods
          Research Methodology
          Research Subjects
          Human Rights
          Researcher-Subject Relations
      ab: 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.
      pubtype: Academic Journal
      doctype:
        research
        systematic review
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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