Interventions to improve awareness and reduce the stigma associated with neurodegenerative conditions in minority ethnic communities: A scoping review protocol

  • Maria Caulfield
  • , Sahdia Parveen
  • , Matthew Prina
  • , Jan R Oyebode
  • , Karen Windle
  • , Catherine Charlwood
  • , Adelina Comas-Herrera
  • , Catherine Quinn
  • , Linda Clare

Research output: Contribution to journalArticlepeer-review

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Abstract

Objective: This scoping review aims to identify interventions aiming to improve awareness of and reduce stigma related to neurodegenerative conditions within South Asian and Black (African-Caribbean, African, African American, Black British) communities with a focus on synthesising the methods employed for culturally tailoring interventions. Introduction: Minority ethnic communities affected by neurodegenerative conditions often face health and social care disparities. This can lead to delayed diagnosis and poor health outcomes. Interventions that provide relevant, accessible information about neurodegenerative conditions may help reduce disparities in care access. There is limited knowledge about the methods used to culturally tailor interventions for minority ethnic communities and their efficacy. Inclusion criteria: Eligible sources will include interventions specifically tailored for South Asian and Black communities, living with dementia, Parkinson’s disease, Huntington’s disease, or motor neurone disease. Interventions must be conducted in countries that are member states of the Organisation for Economic Co-operation and Development where these two groups constitute minority populations and are likely to face inequalities in care access. Methods: A scoping review guided by the Joanna Briggs Institute Manual for Evidence Synthesis will be conducted. Searches of Medline (EBSCO), APA PsycInfo (EBSCO), and EMBASE (Elsevier) will be conducted. Study selection will be based on 100% agreement between two reviewers. Data will be extracted, charted, and summarised narratively followed by consultation with stakeholders. Implications: This review will identify culturally sensitive strategies for raising awareness and reducing the stigma associated with neurodegenerative conditions among South Asian and Black communities within the Organisation for Economic Co-operation and Development countries. By utilising these inclusive approaches, communities may feel more empowered to seek a diagnosis for symptoms and live better with the condition. The findings of this review will be shared with the public and policymakers to promote awareness and evidence-based policy making.
Original languageEnglish
Article numbere0322009
Pages (from-to)1-10
Number of pages10
JournalPLoS One
Volume20
Issue number5
Early online date7 May 2025
DOIs
Publication statusPublished online - 7 May 2025

Bibliographical note

Copyright: © 2025 Caulfield et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Access Statement

No datasets were generated or analysed during the current study. All relevant data from this study will be made available upon study completion

Funding

This research is funded through the NIHR Policy Research Unit in Dementia and Neurodegeneration University of Exeter, reference NIHR206120. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Funders
University of Exeter

    Keywords

    • Awareness
    • Ethnicity - psychology
    • Humans
    • Minority Groups - psychology
    • Neurodegenerative Diseases - psychology - ethnology
    • Scoping Review as Topic
    • Social Stigma
    • Neurodegenerative Diseases/psychology
    • Ethnicity/psychology
    • Minority Groups/psychology

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