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A human rights-based framework for qualitative dementia research.

Alicia Diaz-Gil1, Joanne Brooke2, Olga Kozlowska3

  • 1Oxford Brookes University, UK.

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|May 29, 2023
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Summary

This study introduces a human rights-based framework to include people with dementia in qualitative research. The PANEL principles (Participation, Accountability, Non-discrimination and equality, Empowerment, Legality) guide researchers to improve involvement and outcomes.

Keywords:
Dementia researchcapacityconsenthuman rightsparticipationresearch ethics

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Area of Science:

  • Gerontology
  • Qualitative Research Methods
  • Bioethics

Background:

  • Historically, people with dementia have been excluded from qualitative research due to misconceptions about their ability to express themselves.
  • Research institutions often adopt a paternalistic approach, leading to overprotection and exclusionary practices.
  • Traditional research methodologies can be inherently biased against individuals with cognitive impairments.

Purpose of the Study:

  • To address the exclusion of people with dementia in research.
  • To provide an evidence-based framework for dementia researchers.
  • To promote the inclusion of individuals with dementia in qualitative studies.

Main Methods:

  • Adapting the five principles of human rights—Participation, Accountability, Non-discrimination and equality, Empowerment, and Legality (PANEL)—to the research context.
  • Synthesizing evidence from existing literature to develop a framework for qualitative research with people with dementia.
  • Creating a checklist based on the PANEL principles to guide researchers.

Main Results:

  • A checklist is presented, incorporating questions related to the PANEL principles.
  • The checklist addresses ethical, methodological, and legal considerations for qualitative research involving people with dementia.
  • The framework aims to enhance the design of studies centered on the needs of people with dementia.

Conclusions:

  • The proposed checklist facilitates the development of inclusive qualitative research for people with dementia.
  • The framework is informed by human rights work and policy development in dementia research.
  • Further research is needed to evaluate the checklist's effectiveness in improving participation, ethics approvals, and outcome relevance.