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Pregnant women's experiences of non-invasive prenatal testing (NIPT) in Japan: A qualitative study
Journal of Genetic Counseling ( IF 1.9 ) Pub Date : 2021-08-25 , DOI: 10.1002/jgc4.1494
Kayono Yamamoto 1 , Hyangri Chang 2 , Akimune Fukushima 1
Affiliation  

In Japan, prenatal testing does not include a publicly insured routine health check-up for pregnant women. Hence, taking advantage of such prenatal testing procedures is still not an option for a majority of Japanese women. However, social support systems for children and adults with disabilities have been developed with the assumption that people with disabilities will continue receiving support from their family members, especially their mothers. In this study, we described pregnant women's experiences regarding noninvasive prenatal testing (NIPT) within the context of their physical experiences during the NIPT process, Japanese society, and their medical circumstances. Women with no family history of genetic diseases or fetal disabilities and who had also received negative results after the NIPT explanation were recruited. Altogether, 15 women participated in the biographical narrative interview. The data were subjected to reflexive thematic analysis and signified advanced age for pregnancy as a trigger for both the women's consideration regarding receiving NIPT and interventions from their families and social group members. Participants considered themselves as the main caretaker for the older adults and individuals with disabilities and thus were afraid of the multiple responsibilities inherent in this reality. They were also concerned about the impact on any other siblings if the baby had disabilities. In addition, participants encounter physical and mental changes during the timeframe of the NIPT processes. Hence, as their fetuses mature, the psychological bonds the women develop with them are constantly evolving, and participants with histories of miscarriages or possible miscarriages expressed concerned not only about the results of NIPT but also about the specific possibility of losing their child in any way. In conclusion, the continuous support of these women throughout the NIPT process and social efforts for the improvement of the welfare system for people with disabilities are required to utilize NIPT effectively.

中文翻译:

日本孕妇的无创产前检测 (NIPT) 体验:一项定性研究

在日本,产前检查不包括对孕妇进行公共保险的常规健康检查。因此,对于大多数日本女性来说,利用这种产前检测程序仍然不是一种选择。然而,为残疾儿童和成人制定的社会支持系统是在假设残疾人将继续从其家庭成员,尤其是他们的母亲那里获得支持的情况下开发的。在这项研究中,我们描述了孕妇在 NIPT 过程中的身体经历、日本社会和他们的医疗环境的背景下关于无创产前检测 (NIPT) 的经历。招募没有遗传疾病或胎儿残疾家族史且在 NIPT 解释后也收到阴性结果的女性。共,15 名女性参加了传记叙事采访。对数据进行了反身性主题分析,表明怀孕的高龄是女性考虑接受 NIPT 以及来自其家庭和社会团体成员的干预措施的触发因素。参与者认为自己是老年人和残疾人的主要照顾者,因此害怕这一现实中固有的多重责任。如果婴儿有残疾,他们还担心对任何其他兄弟姐妹的影响。此外,参与者在 NIPT 过程的时间范围内会遇到身体和心理上的变化。因此,随着胎儿的成熟,女性与她们建立的心理联系也在不断发展,有流产史或可能流产史的参与者不仅对 NIPT 的结果表示担忧,而且对以任何方式失去孩子的具体可能性表示担忧。总之,需要这些妇女在整个 NIPT 过程中的持续支持以及社会为改善残疾人福利体系所做的努力,才能有效地利用 NIPT。
更新日期:2021-08-25
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