Department of Genetics, Stanford University School of Medicine, Stanford, CA, USA.
Stanford Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, CA, USA.
J Genet Couns. 2021 Dec;30(6):1683-1694. doi: 10.1002/jgc4.1435. Epub 2021 Jun 14.
Some genetic counselors (GCs) provide care in the inpatient setting. However, there is little literature on inpatient genetic counseling. The purpose of our study was to describe GC's experiences with the provision of genetic counseling services within inpatient care settings. Participants were recruited from respondents to a quantitative survey study on inpatient genetic counseling, which recruited GCs via the National Society of Genetic Counselors forum. GCs seeing at least five inpatients per year were invited to participate in semi-structured interviews. The interview guide explored how and why their inpatient genetic counseling service started, workflow, and the perceived impact of the service. Interviews were transcribed, inductive analysis was used to develop a codebook, and thematic analysis was used to identify themes. Twenty-one inpatient genetic counselors participated in the study. Many participants worked primarily in outpatient roles with some inpatient duties (61.9%), while the rest worked primarily in inpatient roles (38.1%). Most participants have provided inpatient care for <2 years (66.7%). Many participants were involved in inpatient care across multiple specialties (66.7%), most frequently, pediatrics, neonatology, and neurology. Three themes were identified: (a) The convenience of inpatient genetic counseling leads to increased access to appropriate genetics care for medically complex patients and their inpatient healthcare providers, (b) the inpatient genetic counseling process and workflow is not standard and has multiple moving parts, and (c) genetic counselors are fulfilled by the diverse and unique opportunities of the inpatient care setting despite the emotional intensity of this environment. Participants described their inpatient care as valuable because it increases access to genetics services and adds genetics expertise to multidisciplinary inpatient teams. Overall, participants perceive inpatient genetic counseling as a way to bring genetics care directly to patients at a critical time point in their care, which benefits medically complex patients and their multidisciplinary inpatient team.
一些遗传咨询师(GCs)在住院环境中提供护理。然而,关于住院遗传咨询的文献很少。我们的研究目的是描述 GC 在住院护理环境中提供遗传咨询服务的经验。参与者是从一项关于住院遗传咨询的定量调查研究的回复者中招募的,该研究通过国家遗传咨询师协会论坛招募 GC。每年至少接待 5 名住院患者的 GC 被邀请参加半结构化访谈。访谈指南探讨了他们的住院遗传咨询服务是如何以及为何开始的、工作流程以及服务的感知影响。访谈记录被转录,采用归纳分析制定编码手册,并采用主题分析确定主题。21 名住院遗传咨询师参与了这项研究。许多参与者主要从事门诊角色,有一些住院职责(61.9%),而其余的则主要从事住院角色(38.1%)。大多数参与者提供住院护理不到 2 年(66.7%)。许多参与者参与多个专业的住院护理(66.7%),最常见的是儿科、新生儿科和神经科。确定了三个主题:(a)住院遗传咨询的便利性为医疗复杂患者及其住院医疗服务提供者增加了获得适当遗传护理的机会,(b)住院遗传咨询的过程和工作流程不标准,有多个移动部分,(c)遗传咨询师在住院护理环境中因多样化和独特的机会而感到满足,尽管这种环境充满情感强度。参与者描述他们的住院护理是有价值的,因为它增加了获得遗传服务的机会,并为多学科住院团队增加了遗传专业知识。总的来说,参与者认为住院遗传咨询是一种直接为患者提供关键护理点的遗传护理的方式,这对医疗复杂患者及其多学科住院团队有益。