Abstract
Genetic counselors are trained to adapt their counseling skills to meet the needs of their patients. However, counselors often lack specific training regarding how to counsel patients with intellectual disabilities (ID), and literature regarding the optimal methods for counseling these patients is sparse. The purpose of this study was to explore genetic counselors’ experiences when counseling patients with ID. We interviewed ten counselors who practice in the U.S. and represent prenatal, pediatric, cancer, adult, and research specialties. We used a qualitative, semi-structured interview guide to gather information about the nature of a genetic counseling session in which the patient had ID, the challenges and feelings that counselors experience, whether counselors are comfortable counseling patients with ID, the ways in which counselors are able to asses their patients’ level of understanding, and suggestions they have for others. The interviews were transcribed and coded using ATLAS.ti software. Overall, the counselors we interviewed reported being comfortable counseling patients with ID. However, they experienced a wide range of emotions including reward and frustration. They also \r \r \r identified several challenges, including concern that their word choice would lead patients to feel as though something was “wrong with them” and anxiety about communicating abnormal test results. Participants identified strategies for assessing their patients’ level of understanding, which included asking patients to repeat back information and recognizing when their patients were asking inappropriate questions. Finally, participants provided suggestions for working with patients with ID, including simplifying information and talking to patients alone. Our findings suggest that counselors might benefit from small group training to enhance their ability to work with this patient population. Future research should focus on examining the perspectives of counselors in different specialty areas and the experiences of patients with ID who have pursued genetic counseling.