Search

This study examined the data generated as part of a seven-session webinar series that focused on genetics care provision in the medically underserved, rural Appalachian region and examined how these services have adapted to challenging practice environments. Barriers and facilitators to care in our region were considered. Data included a baseline survey of registrants, transcripts of sessions, and feedback about sessions. We analyzed data with a sequential and concurrent mixed methods approach. Registrants (n = 137) were disproportionately healthcare providers with genetic services expertise (37.2%). Approximately half (43.8%) of registrants were from KY, WV, and TN in the central Appalachian region. Our baseline survey found that the most noted barriers were the cost of services, lack of providers, and access to care. The most common facilitator was telehealth. Analysis of transcripts identified barriers that were consistent with those noted in the baseline survey, but additional support and network opportunities were discussed to allow for learning across services. Numerous barriers to service delivery were noted; however, despite challenges, participants identified opportunities and resources in the community. These insights will inform a research agenda aimed at advancing genetics services in rural Appalachia, addressing challenges, and leveraging assets for improved healthcare access and outcomes., (© 2025 Wiley Periodicals LLC.)

Empathy is a significant element in genetic counseling for building relationships with the clients and addressing their issues. However, there are few reports on the experiences of the clients about their perceived empathy in genetic counseling. Cancer genetic counseling needs have been rapidly evolving with the expansion of clinical comprehensive genomic profiling and genetic diagnosis approaches for hereditary cancers. Therefore, this study aimed to reveal empathy perceptions of the clients during cancer genetic counseling. Semi-structured interviews were conducted, and a grounded theory approach was used for data analysis. A total of 13 participants were recruited from organizations for patients with cancer, among whom 11 were patients with hereditary breast and ovarian cancer (HBOC) and two were relatives of patients with HBOC. Data analysis was organized into five categories related to experiences with empathy: (i) prior context to perceive empathy (ii) understanding and consideration, (iii) bedside manner, and (iv) impacted area of perceived empathy; and (v) no empathy. This study highlights the fact that empathy experiences of the clients differ depending on the situation and state of mind. Taken together, this study provides new insights on how to deliver empathic care., (© 2024 National Society of Genetic Counselors.)