Caulfield Maria, Parveen Sahdia, Prina Matthew, Oyebode Jan R, Windle Karen, Charlwood Catherine, Comas-Herrera Adelina, Quinn Catherine, Clare Linda
NIHR Policy Research Unit in Dementia and Neurodegeneration University of Exeter (DeNPRU Exeter), United Kingdom.
Centre for Applied Dementia Studies, University of Bradford, United Kingdom.
PLoS One. 2025 May 7;20(5):e0322009. doi: 10.1371/journal.pone.0322009. eCollection 2025.
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.
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.
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.
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.
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.
本范围综述旨在确定旨在提高南亚和黑人（非裔加勒比人、非洲人、非裔美国人、英国黑人）社区对神经退行性疾病的认识并减少与之相关的耻辱感的干预措施，重点是综合用于文化定制干预措施的方法。
受神经退行性疾病影响的少数族裔社区往往面临健康和社会护理方面的差异。这可能导致诊断延迟和健康结果不佳。提供有关神经退行性疾病的相关且易于获取的信息的干预措施可能有助于减少护理获取方面的差异。关于为少数族裔社区文化定制干预措施所使用的方法及其效果的知识有限。
符合条件的来源将包括专门为患有痴呆症、帕金森病、亨廷顿病或运动神经元病的南亚和黑人社区量身定制的干预措施。干预措施必须在经济合作与发展组织成员国进行，在这些国家这两个群体构成少数群体，并且在护理获取方面可能面临不平等。
将进行一项由乔安娜·布里格斯研究所循证综合手册指导的范围综述。将检索Medline（EBSCO）、APA PsycInfo（EBSCO）和EMBASE（爱思唯尔）。研究选择将基于两位评审员之间100%的一致性。将提取数据、制表并进行叙述性总结，随后与利益相关者进行协商。
本综述将确定在经济合作与发展组织国家的南亚和黑人社区中提高对神经退行性疾病的认识并减少与之相关耻辱感的文化敏感策略。通过采用这些包容性方法，社区可能会更有能力为症状寻求诊断并更好地应对这种疾病。本综述的结果将与公众和政策制定者分享，以提高认识并促进基于证据的政策制定。
