Texas A&M University College of Nursing, College Station, TX, USA.
College of Nursing & Health Sciences, Texas A&M University-Corpus Christi, Corpus Christi, TX, USA.
J Genet Couns. 2021 Jun;30(3):838-848. doi: 10.1002/jgc4.1383. Epub 2021 Jan 26.
Pregnant Hispanic women are underserved with their needs for genetic counseling, despite birth defects remaining the leading cause of infant death in the United States. We present the qualitative findings of a study to understand knowledge and perceptions of prenatal testing in a sample of hard-to-reach underrepresented Hispanic pregnant women in South Texas. The sample for this study was 10 Hispanic pregnant women who were recruited from a high-risk prenatal clinic in South Texas in 2019. The semi-structured interview questions were created based on the researchers' clinical experiences with this population and were designed to examine knowledge and perceptions of participants toward prenatal testing. Analysis of the qualitative data yielded several themes related to prenatal testing: (a) knowledge, (b) confusion, (c) partner's and support persons' opinions, (d) information sharing from providers, (e) psychological benefits, (f) preparation for baby, (g) obstacles, (h) religious influence, and (i) educational tools to assist with understanding. Women's understanding and knowledge of prenatal testing was limited, specifically regarding its purpose, how it works, the benefits, and why it was recommended by their provider. Lack of clarity about why they should take the test and its risks for them and their babies was perceived as something that could impede their acceptance of prenatal testing. All participants agreed that healthcare providers should share more information about prenatal testing in a way that uses 'everyday language' so that they can understand it better. All respondents mentioned that prenatal testing provides information about their baby's health conditions, alleviates their stress and concerns, and psychologically prepares them and their family for what is to come. Identifying ways to increase culturally appropriate education delivered by genetic counselors such as through the adoption of telemedicine and mobile technology can help fill the gap for this underserved population.
尽管出生缺陷仍然是美国婴儿死亡的主要原因，但西班牙裔孕妇的遗传咨询需求未得到满足。我们呈现了一项研究的定性结果，该研究旨在了解南德克萨斯州难以接触的代表性不足的西班牙裔孕妇样本中产前检查的知识和看法。这项研究的样本包括 2019 年从南德克萨斯州的一家高危产前诊所招募的 10 名西班牙裔孕妇。半结构化访谈问题是根据研究人员在该人群中的临床经验创建的，旨在检查参与者对产前检查的知识和看法。对定性数据的分析得出了与产前检查相关的几个主题：（a）知识，（b）困惑，（c）伴侣和支持人员的意见，（d）提供者的信息共享，（e）心理收益，（f）为宝宝做准备，（g）障碍，（h）宗教影响，以及（i）帮助理解的教育工具。女性对产前检查的理解和了解有限，特别是关于其目的、如何运作、好处以及为什么提供者建议她们进行检查。对为什么要进行检查以及对她们及其婴儿的风险缺乏明确认识，被认为是阻碍她们接受产前检查的因素之一。所有参与者都同意医疗保健提供者应该以使用“日常语言”的方式分享更多关于产前检查的信息，以便他们能够更好地理解。所有受访者都提到产前检查可以提供有关婴儿健康状况的信息，减轻他们的压力和担忧，并在心理上为他们和他们的家人做好准备。确定通过采用远程医疗和移动技术等方式增加遗传咨询师提供的文化适宜教育的方法，可以帮助填补这一服务不足人群的空白。
