通过电报和电话进行癌症遗传咨询:一项定性研究,探索澳大利亚癌症遗传学背景下患者和遗传咨询师的经验。

IF 1.9 4区 医学 Q3 GENETICS & HEREDITY Journal of Genetic Counseling Pub Date : 2024-10-06 DOI:10.1002/jgc4.1982
Jessica Finney, Verna Fargas, Tina Gonzalez, Natalie Taylor, Claire E Wakefield, Kathy Tucker, Erin Turbitt, Rachel Williams
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引用次数: 0

摘要

在遗传咨询实践中,对直接面向患者(DTP)的电报遗传学(通过视频会议提供遗传学服务)的需求迅速增加,尤其是在 COVID-19 大流行之后。近期的电报遗传学文献大多是定量文献,且不针对澳大利亚的情况。为了填补这一空白,我们开展了一项定性访谈研究。这项研究调查了参加随机对照试验的患者和遗传咨询师(GCs)使用电报和电话进行癌症遗传咨询预约的经历。在患者随机接受电话或电报遗传咨询预约后,对患者(22 人)和遗传咨询师(6 人)进行了 28 次半结构式访谈。访谈探讨了参与者对电报遗传学的体验,并比较了 DTP 电报遗传学与电话遗传学和面对面遗传学。我们使用编码本主题分析法对数据进行主题总结。患者和地方保健中心的参与者都指出了使用电传治疗的积极体验;据报告,电传治疗的主要好处包括减少旅行时间、节省时间和成本、轻松、方便、高效和舒适。技术问题和隐私问题被强调为电报遗传学的潜在缺点。除一名患者外,其他所有患者在使用电报技术时都感受到了充分的情感支持。电报遗传学既有优点,也有局限性;但总体而言,这组人群认为电报遗传学是一种合适且可接受的遗传咨询方式,与面谈或电话预约相比有很多优点。无论未来 COVID-19 大流行是否会受到限制,都应开展进一步研究,为长期实施电传遗传学提供证据。
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Cancer genetic counseling via telegenetics and telephone: A qualitative study exploring the experience of patients and genetic counselors in an Australian cancer genetics context.

The demand for direct-to-patient (DTP) telegenetics (genetics services delivered via videoconferencing) in genetic counseling practice has rapidly increased, particularly since the COVID-19 pandemic. Recent telegenetics literature is mostly quantitative and not in the Australian context. A qualitative interview study was conducted to address this gap. This research investigated the experiences of patients and genetic counselors (GCs), enrolled in a randomized controlled trial, using telegenetics and telephone for cancer genetic counseling appointments. Twenty-eight semi-structured interviews with patients (n = 22) and GCs (n = 6) were conducted following patient randomization to either a telephone or telegenetics genetic counseling appointment. The interviews explored participant's experiences of telegenetics and compared DTP telegenetics with telephone and in-person delivery. Codebook thematic analysis was used to develop topic summaries from the data. Patient and GC participants noted positive experiences of telegenetics; with key benefits reported as reduced travel time, time and cost saving, ease, convenience, efficiency, and comfortability. Technical issues and privacy concerns were highlighted as potential disadvantages of telegenetics. All but one patient felt sufficiently emotionally supported while using telegenetics. Telegenetics has both benefits and limitations; however, generally, this cohort found telegenetics to be a suitable and acceptable mode of delivery for genetic counseling with many advantages over in-person or telephone appointments. Further studies should be conducted to provide evidence for the long-term implementation of telegenetics, regardless of any future COVID-19 pandemic lockdown restrictions.

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来源期刊
Journal of Genetic Counseling
Journal of Genetic Counseling GENETICS & HEREDITY-
CiteScore
3.80
自引率
26.30%
发文量
113
审稿时长
6 months
期刊介绍: The Journal of Genetic Counseling (JOGC), published for the National Society of Genetic Counselors, is a timely, international forum addressing all aspects of the discipline and practice of genetic counseling. The journal focuses on the critical questions and problems that arise at the interface between rapidly advancing technological developments and the concerns of individuals and communities at genetic risk. The publication provides genetic counselors, other clinicians and health educators, laboratory geneticists, bioethicists, legal scholars, social scientists, and other researchers with a premier resource on genetic counseling topics in national, international, and cross-national contexts.
期刊最新文献
Navigating sexual orientation and gender identity data privacy concerns in United States genetics practices Revision request to the standardized pedigree nomenclature regarding surrogacy versus gestational carriers and suggestion for new nomenclature pertaining to embryo adoption Genetic testing for children at risk to be hemophilia carriers Issue Information A heartfelt thank you to the 2024 Journal of Genetic Counseling reviewers
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