移民和难民背景人群围产期遗传筛查的经验:范围综述。

IF 3.7 2区 生物学 Q2 BIOCHEMISTRY & MOLECULAR BIOLOGY
Anaita Kanga-Parabia, Alison D Archibald, Laura J Biggs, Sharon Lewis, Erin Tutty, Belinda Dawson-McClaren
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引用次数: 0

摘要

难民和移民背景的人往往在医疗保健方面面临不良经历和结果,基因医疗保健也不例外。了解这些健康不平等是否以及如何表现出来,是实现公平的围产期遗传或染色体疾病遗传筛查(在孕前、产前或新生儿期间提供)的重要一步。进行了一项范围审查,以审查有关移民和难民背景的人围产期遗传筛查的认识和经验的国际证据。在Medline、Embase和CINAHL数据库中应用搜索策略来识别符合资格标准的文章。使用描述性和内容分析来综合证据,并使用比例普遍性和关系自主性的理论框架来解释研究结果。在确定的11046篇独特文章中,26篇符合纳入标准并进行了全文审查。大多数研究都是在西方国家进行的,参与者主要出生在亚洲、南美或非洲。研究表明,不同的意识,知识,态度和接受筛选。一些研究强调缺乏足够的语言资源,使用的概念在特定社区不被认可,以及与医疗保健提供者的互动不良。解决上述问题的战略包括以人为本的咨询、增加咨询时间、获得口译员以及对相关提供者的培训。其他建议包括解决结构性、财政和地理障碍,以改善获得筛查和相关护理的机会。虽然需要进一步的研究,我们提出证据和理论知情的战略,以改善来自移民和难民背景的人的围产期遗传筛查服务。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Experiences of perinatal genetic screening for people from migrant and refugee backgrounds: a scoping review.

People from refugee and migrant backgrounds often face poor experiences and outcomes in healthcare, and genetic healthcare is no exception. Understanding whether and how these health inequities manifest is an important step towards equitable perinatal genetic screening for genetic or chromosomal conditions (offered preconception, prenatally, or during the newborn period). A scoping review was conducted to review international evidence of perceptions and experiences of perinatal genetic screening for people from migrant and refugee backgrounds. Search strategies were applied to Medline, Embase, and CINAHL databases to identify articles meeting eligibility criteria. Evidence was synthesised using descriptive and content analysis, with theoretical frameworks of proportionate universality and relational autonomy used to interpret findings. Of 11,046 unique articles identified, twenty-six met inclusion criteria and underwent full-text review. Most studies were set in Western countries, and participants were primarily born in Asia, South America, or Africa. Studies indicated varying awareness, knowledge, attitudes, and uptake of screening. Several studies highlighted a lack of adequate in-language resources, the use of concepts that were unrecognised in particular communities, and poor interactions with healthcare providers. Strategies to address the above issues included person-centred counselling, increased consultation time, access to interpreters, and training for relevant providers. Other recommendations included addressing structural, financial, and geographical barriers to improve access to screening and associated care. Whilst additional research is required, we propose evidence and theory-informed strategies to improve perinatal genetic screening services for people from migrant and refugee backgrounds.

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来源期刊
European Journal of Human Genetics
European Journal of Human Genetics 生物-生化与分子生物学
CiteScore
9.90
自引率
5.80%
发文量
216
审稿时长
2 months
期刊介绍: The European Journal of Human Genetics is the official journal of the European Society of Human Genetics, publishing high-quality, original research papers, short reports and reviews in the rapidly expanding field of human genetics and genomics. It covers molecular, clinical and cytogenetics, interfacing between advanced biomedical research and the clinician, and bridging the great diversity of facilities, resources and viewpoints in the genetics community. Key areas include: -Monogenic and multifactorial disorders -Development and malformation -Hereditary cancer -Medical Genomics -Gene mapping and functional studies -Genotype-phenotype correlations -Genetic variation and genome diversity -Statistical and computational genetics -Bioinformatics -Advances in diagnostics -Therapy and prevention -Animal models -Genetic services -Community genetics
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