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本文引用的文献

1
A Capacity Audit of Medical Geneticists and Genetic Counsellors in South Africa, 2024: A National Crisis.南非医学遗传学家和遗传咨询师能力审计,2024 年:全国危机。
Genes (Basel). 2024 Sep 6;15(9):1173. doi: 10.3390/genes15091173.
2
The effect of prenatal education on health anxiety of primigravid women.产前教育对初产妇健康焦虑的影响。
BMC Pregnancy Childbirth. 2024 Aug 14;24(1):541. doi: 10.1186/s12884-024-06718-2.
3
"We are just not sure what that means or if it's relevant": Uncertainty when gathering family history information in South African prenatal genetic counseling consultations.“我们只是不确定这意味着什么,或者它是否相关”:南非产前遗传咨询会诊中收集家族病史信息时的不确定性
Soc Sci Med. 2024 Feb;342:116555. doi: 10.1016/j.socscimed.2023.116555. Epub 2023 Dec 29.
4
Telemedicine in Low- and Middle-Income Countries During the COVID-19 Pandemic: A Scoping Review.新冠疫情期间中低收入国家的远程医疗:范围综述。
Front Public Health. 2022 Jun 22;10:914423. doi: 10.3389/fpubh.2022.914423. eCollection 2022.
5
Genetics providers' experiences using telehealth: A grounded theory approach.遗传学服务提供者使用远程医疗的体验:扎根理论方法。
J Genet Couns. 2022 Oct;31(5):1155-1163. doi: 10.1002/jgc4.1586. Epub 2022 May 5.
6
Prenatal Genetic Screening and Diagnostic Testing: Assessing Patients' Knowledge, Clinical Experiences, and Utilized Resources in Comparison to Provider's Perceptions.产前基因筛查与诊断检测:对比医疗服务提供者的认知,评估患者的知识水平、临床经验及所利用的资源。
AJP Rep. 2022 Feb 4;12(1):e27-e32. doi: 10.1055/s-0041-1742236. eCollection 2022 Jan.
7
"You're a 'high-risk' customer": A qualitative study of women's experiences of receiving information from health professionals regarding health problems or complications in pregnancy.“你是高风险客户”:一项关于女性在妊娠期间接受健康专业人员关于健康问题或并发症的信息的定性研究。
Women Birth. 2022 Sep;35(5):e477-e486. doi: 10.1016/j.wombi.2021.12.002. Epub 2021 Dec 31.
8
Factors Influencing Patient Preferences for Telehealth Cancer Genetic Counseling During the COVID-19 Pandemic.影响 COVID-19 大流行期间患者对远程医疗癌症遗传咨询偏好的因素。
JCO Oncol Pract. 2022 Apr;18(4):e462-e471. doi: 10.1200/OP.21.00301. Epub 2021 Oct 15.
9
Virtual Care in Patients with Cancer: A Systematic Review.癌症患者的虚拟护理:系统评价。
Curr Oncol. 2021 Sep 8;28(5):3488-3506. doi: 10.3390/curroncol28050301.
10
Genetic counseling experiences at the University of Cape Town during COVID-19.新冠疫情期间开普敦大学的遗传咨询经验。
J Genet Couns. 2021 Oct;30(5):1298-1309. doi: 10.1002/jgc4.1520. Epub 2021 Sep 28.

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.

DOI:10.1002/pd.6828
PMID:40540324
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12180568/
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。