Kelvin Chang, Courtney B. Cook, Zoe Lohn, Angela C. Bedard
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引用次数: 0
Abstract
Increasing demand for genetics services has highlighted a need for more efficient genetic counseling service delivery models. Family group appointments (FGAs) may be a time-efficient approach to facilitate cascade genetic testing. This study aimed to explore genetic counselors' (GCs) perspectives on genetic counseling in a family group setting to inform effective practices for this service delivery method. Semi-structured interviews were conducted with GCs practicing in North America who have conducted FGAs for cascade genetic testing. Participants completed a survey about demographic information and FGA experience. A subset of survey respondents was invited to complete an interview. Interview transcripts were coded using an interpretive description approach. 138 GCs completed the survey and 13 participated in interviews. Genetic counselors reported that the benefits of FGAs include family member support, group discussion, efficiency, effects on cascade testing uptake, and job satisfaction. Key considerations included various logistical factors, respecting individual preferences about genetic testing, maintaining privacy, and existing family dynamics. Participants discussed how FGAs condense information and open appointment slots for other patients in their clinic. Logistical considerations identified were related to scheduling and attendance, such as GCs holding licensure in every state that patients are located in during the appointment, aligning multiple patient schedules, and flexibility with different appointment modalities. Benefits identified in our study highlight potential reasons that GCs and patients may consider FGAs as a preferred service delivery model for certain appointments. The considerations described in our study can help guide GCs arranging, conducting, and following up with a FGA. Our results also detail the importance of relational autonomy in medical decision-making, which is emphasized in FGAs and should be considered by genetics service providers accordingly.
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.