U.S. Genetic counselors' perceptions of inpatient genetic counseling: A valuable model for medically complex patients.

Abstract

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 <2years (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.