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

Latinx individuals' knowledge of, preferences for, and experiences with prenatal genetic testing: a scoping review.
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DOI:
10.1186/s12978-022-01438-2
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发表时间:
2022-06-06
影响因子:
3.4
通讯作者:
Pineros-Leano, Maria
Pineros-Leano, Maria
中科院分区:
医学2区
文献类型:
--
作者:
Grafft, Natalie;Dwyer, Andrew A.;Pineros-Leano, Maria

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美国妇产科医师学会建议,无论已知的风险因素如何,所有孕妇都应进行产前基因检测(PGT)。然而,在接受PGT方面存在显著的种族/民族差异,导致了差异。拉丁裔(拉丁裔)是美国增长最快的族群之一,但他们的PGT录取率很低。这个系统的范围审查的目的是提供一个景观现有文献拉丁人的知识,偏好,并与产前和孕前基因检测的经验。综合目前的科学状况可以为制定适合文化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)。我们对电子数据库(PubMed、PsycINFO、CINAHL、Medline、Embase、Eric、Social Services Abstracts和PsycArticles)中的已发表文章和灰色文献进行了结构化、系统的文献检索。检索了2021年3月之前发表的与遗传学、妊娠和拉丁裔妇女有关的英文文章。由独立调查人员对文章的标题、摘要和全文进行审查,以评估纳入和排除标准。偏倚风险由两名研究者评估。采用迭代主题分析将研究结果分组到主题中,以确定可能的干预目标。搜索产生了5511篇独特的文章。标题筛选后,335篇论文进行了摘要审查,61篇论文进行了全文审查。28项研究符合纳入标准,另有7项研究在查阅参考文献后被纳入。三个主要主题出现了: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,不一致的患者-提供者语言(n = 5)、沟通不周(n = 4)和缺乏一致的决策(n = 4)对高质量的PGT决策构成障碍。移民身份(n = 1)和宗教信仰(n = 5)是影响PGT决定的其他因素。已确定的研究表明,文化和语言因素影响拉丁人的PGT决策。拉丁裔个体对PGT信息的理解和回忆被文化和语言上一致的提供者增强了,这表明文化知情的干预可以提高PGT的可接受性并支持高质量的决策。今后克服性别平等的方向可能包括社区卫生工作者和文化经纪人,以增强拉丁裔人民作出符合其价值观和偏好的知情决定的能力。在线版本包含补充材料,可在10.1186/s12978-022-01438-2获得。在产前基因检测(PGT)中存在显著的种族、民族和语言差异。拉丁裔是美国人口增长最快的族群之一,但他们对PGT的接受率很低。这个范围综述提供了一个系统的文献搜索,以更好地了解拉丁裔个体的知识,偏好和经验与PGT。系统地检索了8个电子数据库,并对确定的文章进行了标题、摘要、全文和参考文献审查。进行迭代主题分析,将文章结果分组为主题。35项研究符合纳入标准,确定了三个主要主题:遗传知识/素养,提供者(错误)沟通/患者满意度和跨文化信仰。研究结果表明,不一致的患者-提供者决策和语言与患者-提供者沟通不端构成了高质量PGT决策的障碍。当以文化和语言和谐的方式传递时,拉丁裔个体对PGT信息的理解和回忆得到改善。这表明,文化知情的干预措施,包括使用社区卫生工作者或文化经纪人,可能提高PGT的可接受性,并支持高质量的怀孕决定。在线版本包含补充材料,可在10.1186/s12978-022-01438-2获得。
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). 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. 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. 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. The online version contains supplementary material available at 10.1186/s12978-022-01438-2. Significant racial, ethnic, and language disparities exist in prenatal genetic testing (PGT). Latina (Latinx) people, one of the fastest growing ethnic groups in the United States, have low acceptance rates of PGT. This scoping review provides a systematic search of the literature to better understand Latinx individuals’ knowledge of, preferences for, and experiences with PGT. Eight electronic data bases were systematically searched and identified articles underwent title, abstract, full text, and reference review. Iterative thematic analysis was conducted to group article findings into themes. Thirty-five studies met inclusion criteria and three overarching themes were identified: genetic knowledge/literacy, provider (mis)communication/patient satisfaction, and cross-cultural beliefs. Findings indicate that discordant patient-provider decision making and language and patient provider miscommunication pose barriers to high-quality PGT decisions. Latinx individuals’ understanding and recall of PGT information is improved when delivered in a culturally and linguistically concordant manner. This suggests culturally-informed interventions, including the use of community health workers or cultural brokers, may enhance PGT acceptability and support high quality pregnancy decisions. The online version contains supplementary material available at 10.1186/s12978-022-01438-2.
DOI: 10.2105/ajph.89.11.1658
发表时间: 1999-11-01
影响因子: 12.7
作者:
Browner, CH;Preloran, HM;Cox, SJ
通讯作者: Cox, SJ
DOI: 10.1111/j.1552-6909.1998.tb02597.x
发表时间: 1998-01-01
期刊: Journal of obstetric, gynecologic, and neonatal nursing : JOGNN
影响因子: --
作者:
Freda, M C;DeVore, N;Merkatz, I R
通讯作者: Merkatz, I R
DOI: 10.1016/j.pec.2004.03.004
发表时间: 2005-03-01
影响因子: 3.5
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Hunt, LM;de Voogd, KB;Castañeda, H
通讯作者: Castañeda, H
DOI: 10.1097/aog.0000000000000843
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影响因子: 7.2
作者:
Bryant, Allison S.;Norton, Mary E.;Kuppermann, Miriam
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DOI: 10.1002/pd.4599
发表时间: 2015-08-01
期刊: PRENATAL DIAGNOSIS
影响因子: 3
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Farrell, Rachel;Hawkins, Anne;Taylor, Joanne
通讯作者: Taylor, Joanne