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南非公共医疗环境中高龄孕产妇对电话遗传咨询的看法

Perspectives of Women of Advanced Maternal Age on Telephonic Genetic Counselling in a South African Public Healthcare Setting.

作者信息

Bayley Samantha, Malope Malebo, Laing Nakita

机构信息

University of Cape Town Division of Human Genetics, Observatory, South Africa.

Stellenbosch University Division of Molecular Biology and Human Genetics, Tygerberg, South Africa.

出版信息

Prenat Diagn. 2025 Jun;45(7):896-905. doi: 10.1002/pd.6828.

Abstract

OBJECTIVE

The COVID-19 pandemic necessitated a shift from in-person to telephonic genetic counselling (TGC) for advanced maternal age (AMA) patients at Groote Schuur Hospital. While prior studies suggest that telegenetics performs comparably to in-person counselling, little qualitative research exists in low-to-middle-income countries. This study explores AMA patients' experiences with TGC post-pandemic.

METHOD

This qualitative study used semi-structured interviews conducted in-person and telephonically, analysed through thematic data analysis following a phenomenological approach.

RESULTS

Participants had mixed experiences with TGC, influenced by trust-both in the genetic counsellor and the broader healthcare system. While most trusted their counsellor, some struggled with the lack of visual cues in the TGC session. Decision-making was shaped not only by risk perception and support systems, but also by emotional readiness, financial realities, and previous healthcare experiences. Participants valued TGC's convenience but noted limitations in emotional connection and partner involvement. Information sources varied, with some relying on the TGC session, while others sought additional online resources. The referral process from Midwife Obstetric Units was inconsistent, contributing to misunderstandings and broader distrust in the public health system.

CONCLUSION

Despite some challenges, most participants found TGC informative and beneficial for decision-making. Addressing structural barriers, clarifying referrals, and enhancing emotional engagement could enhance TGC services in similar settings.

摘要

目的

新冠疫情使得格罗特舒尔医院对高龄产妇(AMA)的遗传咨询从面对面咨询转向电话遗传咨询(TGC)。虽然先前的研究表明远程遗传学咨询的效果与面对面咨询相当,但在低收入和中等收入国家,相关的定性研究较少。本研究探讨了疫情后高龄产妇对电话遗传咨询的体验。

方法

本定性研究采用了面对面和电话进行的半结构化访谈,并采用现象学方法通过主题数据分析进行分析。

结果

参与者对电话遗传咨询的体验各异,这受到对遗传咨询师和更广泛医疗系统的信任的影响。虽然大多数人信任他们的咨询师,但有些人在电话遗传咨询过程中因缺乏视觉线索而感到困扰。决策不仅受到风险认知和支持系统的影响,还受到情绪准备、经济现实和以往医疗经历的影响。参与者重视电话遗传咨询的便利性,但指出在情感联系和伴侣参与方面存在局限性。信息来源各不相同,一些人依赖电话遗传咨询环节,而另一些人则寻求更多在线资源。助产士产科病房的转诊流程不一致,导致了误解以及对公共卫生系统更广泛的不信任。

结论

尽管存在一些挑战,但大多数参与者认为电话遗传咨询对决策有参考价值且有益。解决结构性障碍、明确转诊流程并加强情感互动可以改善类似环境下的电话遗传咨询服务。

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