In May 2013, Heartland began an initiative called, “Assessing the Barriers to Access for Hispanic Populations within four states: Arkansas, Oklahoma, Nebraska, and Kansas.” This initiative stemmed from two main questions:
(1) What are the barriers to accessing genetic services for Hispanic patients?
(2) What can genetic service providers do to provide culturally competent quality care for Hispanic patients?
Approximately 20 individuals in these four states were interviewed in an effort to identify the issues surrounding access and provision of culturally competent medical genetics services. Barriers to access that were reported included: financial difficulties, such as lack of transportation and cost of services, language issues, culture differences, and fear of immigration services.
Based on the information obtained on the preliminary interviews, Heartland is implementing a qualitative research project. This project involves interviewing Spanish speaking families with genetic conditions about their experience in accessing genetic services and other specialty care. Heartland received IRB approval from The University of Arkansas for Medical Sciences (UAMS) on April 11, 2014 to interview approximately 80 families in these four states. The interviews are completely voluntary and held in Spanish. The study coordinators travel to the states mentioned above to interview caregiver’s in-person in a location where the families are most comfortable.
As of today, the study coordinators have completed interviews in Kansas, Oklahoma, and Nebraska.