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拉丁裔个体对产前基因检测的了解、偏好和体验:范围综述。

Latinx individuals' knowledge of, preferences for, and experiences with prenatal genetic testing: a scoping review.

机构信息

School of Social Work, Boston College, Chestnut Hill, MA, 20467, USA.

William F. Connell School of Nursing, Boston College, Chestnut Hill, MA, 02467, USA.

出版信息

Reprod Health. 2022 Jun 6;19(1):134. doi: 10.1186/s12978-022-01438-2.

Abstract

BACKGROUND

The American College of Obstetricians and Gynecologists recommends prenatal genetic testing (PGT) be offered to all pregnant persons regardless of known risk factors. However, significant racial/ethnic differences exist regarding acceptance of PGT contributing to disparities. Latinas (Latinx), one of the fastest growing ethnic groups in the United States, have low PGT acceptance rates. This systematic scoping review aimed to provide a landscape of existing literature on Latinx individuals' knowledge of, preferences for, and experiences with prenatal and preconception genetic testing. Synthesizing the current state of the science may inform development of culturally tailored interventions to support high-quality PGT decisions (e.g., informed, aligned with a pregnant persons' values).

METHODS

We conducted a structured, systematic literature search of published articles and gray literature in electronic databases (PubMed, PsycINFO, CINAHL, Medline, Embase, Eric, Social Services Abstracts, and PsycArticles). Articles in English published prior to March 2021 were retrieved relating to genetics, pregnancy, and Latina women. Articles underwent title, abstract and full-text review by independent investigators to assess inclusion and exclusion criteria. Risk of bias was evaluated by two investigators. Iterative thematic analysis was employed to group study findings into themes to identify possible targets for interventions.

RESULTS

The search generated 5511 unique articles. After title screening, 335 underwent abstract review and subsequently 61 full-text review. Twenty-eight studies met inclusion criteria and 7 additional studies were included after reviewing reference lists. Three overarching themes emerged: genetic knowledge/literacy (26/35, 74%), provider (mis)communication/patient satisfaction (21/35, 60%), and cross-cultural beliefs (12/35, 34%). Studies indicate discordant patient-provider language (n = 5), miscommunication (n = 4), and lack of concordant decision-making (n = 4) pose barriers to high-quality PGT decisions. Immigration status (n = 1) and religious beliefs (n = 5) are additional factors influencing PGT decisions.

CONCLUSIONS

Identified studies suggest that cultural and linguistic factors affect Latinx PGT decision-making. Latinx individual's comprehension and recall of PGT information is enhanced by culturally and linguistically concordant providers-suggesting that culturally-informed interventions may enhance PGT acceptability and support high-quality decisions. Future directions to surmount PGT disparities may include community health workers and cultural brokers to empower Latinx people to make informed decisions aligned with their values and preferences.

摘要

背景

美国妇产科医师学会建议所有孕妇进行产前基因检测(PGT),无论其已知风险因素如何。然而,在接受 PGT 方面,不同种族/族裔之间存在显著差异,导致存在差异。拉丁裔(拉丁裔)是美国增长最快的族裔群体之一,他们接受 PGT 的比例较低。本系统范围综述旨在提供有关拉丁裔个体对产前和孕前基因检测的知识、偏好和经验的现有文献概述。综合当前科学状况可以为制定文化适应的干预措施提供信息,以支持高质量的 PGT 决策(例如,知情、与孕妇的价值观一致)。

方法

我们对电子数据库(PubMed、PsycINFO、CINAHL、Medline、Embase、Eric、Social Services Abstracts 和 PsycArticles)中已发表的文章和灰色文献进行了结构化、系统的文献检索。检索了发表于 2021 年 3 月之前的与遗传学、妊娠和拉丁裔女性相关的英文文章。由独立调查人员对文章进行标题、摘要和全文审查,以评估纳入和排除标准。由两名调查人员评估偏倚风险。采用迭代主题分析将研究结果分组为主题,以确定干预的可能目标。

结果

搜索生成了 5511 条独特的文章。经过标题筛选后,有 335 篇进行了摘要审查,随后有 61 篇进行了全文审查。28 项研究符合纳入标准,在审查参考文献后又纳入了 7 项研究。出现了三个总体主题:遗传知识/素养(26/35,74%)、提供者(错误)沟通/患者满意度(21/35,60%)和跨文化信仰(12/35,34%)。研究表明,患者与提供者之间语言不匹配(n=5)、沟通不畅(n=4)以及缺乏一致的决策制定(n=4)是高质量 PGT 决策的障碍。移民身份(n=1)和宗教信仰(n=5)是影响 PGT 决策的其他因素。

结论

已确定的研究表明,文化和语言因素会影响拉丁裔 PGT 决策。具有文化和语言一致性的提供者可以增强拉丁裔个体对 PGT 信息的理解和回忆,这表明文化知情的干预措施可能会提高 PGT 的可接受性,并支持高质量的决策。克服 PGT 差异的未来方向可能包括社区卫生工作者和文化经纪人,以赋予拉丁裔个人权力,使他们能够做出符合自己价值观和偏好的知情决策。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f449/9169270/b2b4ee1b8400/12978_2022_1438_Fig1_HTML.jpg

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