Foster Parents’ Experiences with and Barriers to Genetic Services for Medically Complex Children
Jaycie Rickert
Co-Presenters: Individual Presentation
College: The College of Health Professions and Human Services
Major: Genetic Counseling
Faculty Research Mentor: Laura Limone, Josie Pervola
Abstract:
Previous research shows that the quality of healthcare for children in foster care needs improvement, a problem that is further exacerbated by the lack of access to their genetic information and family health history. Moreover, children in foster care face disproportionately higher rates of medical complications, autism spectrum disorder, and developmental delays. Despite these heightened risks, little is known about foster parents’ experiences with genetic counseling services. This study utilized a mixed-methods survey to examine foster parents’ experiences and barriers to genetic services for their medically complex foster children. Quantitative survey responses assessed levels of awareness and engagement with genetic counseling services, while qualitative data from open-text responses were thematically analyzed to further explore personal experiences, service utilization, and unmet needs. The results from our survey (n=50) highlight gaps in genetic services for foster families and emphasize the need for appropriate referrals, communication of potential benefits, and assistance with financial barriers. These results have implications for genetic counselors, general healthcare providers, and child welfare systems in ensuring equitable access to genetic services for the foster care population.