Exploring the experience of communication in healthcare settings with parents of children with a rare genetic condition: "It's the more negative ones that you remember" [0.03%]
罕见遗传病患儿父母的医疗沟通体验探究：“往往记住的是负面经历”
Lucy Burbury,Samantha Ayres,Jackie Boyle et al.
Lucy Burbury et al.
Rare genetic conditions (molecularly diagnosed and undiagnosed) of childhood are typically complex in presentation and natural history. Consequently, the diagnostic odyssey can result in families having multiple interactions with diverse he...
Prospective parents' views on reproductive genetic carrier screening: "You know better, you do better" [0.03%]
孕父母对生殖遗传携带者筛查的观点：“了解的更多，做得更好”
Chaya M Goldman,Sharon Lewis,John Massie et al.
Chaya M Goldman et al.
Reproductive genetic carrier screening (RGCS) allows screening for hundreds of autosomal recessive and X-linked conditions. Multiple clinical professional bodies recommend that RGCS be offered to all prospective parents. There is some resea...
Putting control into parents' hands: Parent experiences with a genomic results e-booklet [0.03%]
把控制权交给父母：基因组结果电子小册子的家长体验报告
Shelin Adam,Patricia Gombas,Michelle Demos et al.
Shelin Adam et al.
We evaluated the clinical use of a customizable, multi-language, Genomic Results Booklet (GRB)-a printable e-booklet co-designed with parents-to provide information and guidance to families post-genomic testing. The GRB provides individual ...
The evolving role of genetic counselors in South Africa: A decade of growth [0.03%]
南非遗传咨询师的角色演变：十年的成长历程
Elzette Gilfillan,Monica Araujo,Jennifer Kromberg et al.
Elzette Gilfillan et al.
Genetic counseling has evolved from focusing solely on congenital anomaly prevention to incorporating psychological counseling. Traditionally, its goal has been to enhance patient care by providing clinical information and facilitating psyc...
Halle McCormick,Leah Wetherill,Laura Oehlman et al.
Halle McCormick et al.
Genetic counseling students face numerous stressors during their graduate program, which can lead to negative outcomes such as burnout. Burnout can negatively impact students' ability to perform well, maintain stamina, and feel competent th...
Evaluating pregnancy termination rates for fetal chromosome and single gene disorders [0.03%]
评估胎儿染色体和单基因缺陷的妊娠终止率
Madeline J Herman,Emily B Rosenfeld,Nicole Kasatkin et al.
Madeline J Herman et al.
We report pregnancy termination rates following a variety of fetal diagnoses and determine which factors may influence this decision. We conducted a retrospective chart review of pregnancies diagnosed with a genetic abnormality at a single ...
Addressing family communication in genetic counseling: A scoping review of process studies [0.03%]
遗传咨询中家庭沟通的研究：过程研究的范畴审查
Maria Barbosa,Milena Paneque,Sofia Fontoura Dias et al.
Maria Barbosa et al.
Process studies explore the content and dynamics established during genetic counseling (GC), allowing a greater understanding of what happens. No literature review has specifically examined how family communication of genetic information ha...
Assessing the perspectives of genetic counselors with oncology patients at the end of life [0.03%]
评估遗传咨询师在肿瘤患者临终阶段的观点
Rosalyn D Brown,Lori Williamson,Natalie Brooke Peeples et al.
Rosalyn D Brown et al.
Cancer genetic services identify individuals that may have a hereditary component to cancer, as it is estimated that up to 10% of cancers are due to a cancer-predisposition gene variant. When an oncology patient has reached the end of life ...
Fifteen years of the master's degree in genetic counseling in Portugal: Are we heading in the right direction? [0.03%]
葡萄牙遗传咨询硕士专业十五年：我们走对方向了吗？
Inês Moreira,Lídia Guimarães,Milena Paneque
Inês Moreira
Genetic counseling arose as a field in the late 1960s in the United States, with the creation of the first master's level degree. Since then, the profession has expanded globally, with several training degrees being established and genetic ...
Optimizing risk-reducing surgery and aspirin decision aids for Lynch syndrome carriers using the person-based approach: A think-aloud interview study [0.03%]
采用以人为本的方法优化林奇综合征携带者降低风险的手术和阿司匹林决策辅助工具的思考型访谈研究
Kelly Kohut,Kate Morton,Lesley Turner et al.
Kelly Kohut et al.
Lynch syndrome "carriers" carry a germline pathogenic variant conferring gene-, sex-, and organ-specific increased cancer risks. They are presented with difficult, interrelated choices over their lifetime. This study was part of a larger pr...