KELLY KEMAK
CAPSTONE
Capstone Project Committee: Randi Stewart, M.S., CGC; Carolina Hacker; Pamela Reitnauer, M.D.
Healthcare transition is the shift from pediatric to adult oriented care. For youth with chronic or genetic conditions, particularly those with intellectual disability or learning delays, the transition process can be complex, and responsibilities often fall upon the family. This study aimed to assess whether transition has occurred, how and by whom the process was initiated, limiting factors, challenges experienced, services utilized, advice from families, and the role of genetic counselors in transition. Parents of children, age 18 to 35 years with intellectual disability or learning delays, were recruited to complete an electronic survey. Thirty-seven participants completed the survey including 29 whose children had a diagnosed genetic condition. Almost two-thirds of families had completed transition and felt their transition had been successful. Many families experienced challenges and received little support from the healthcare community. One-third of families had not transitioned and described factors that inhibited the process including reluctance to change providers and lack of appropriate adult services. Respondents highlighted ways in which genetic counselors could be involved in the transition process including providing informational and emotional support and participating in the cultivation of care guidelines. Overall, our findings suggest that families of children with special healthcare needs are often not receiving transition support and have unmet needs.
Since Graduation
After graduating in 2018, Kelly started her career by accepting a position in Wilmington, DE, working as a pediatric genetic counselor at Nemours AI DuPont Hospital for Children. In a position split between general genetics and developmental pediatrics, she spent two years covering inpatient service, outpatient genetics clinic and worked to integrate genetic counseling services into a multidisciplinary autism clinic. Although she enjoyed the challenges of pediatric genetic counseling, 2020 brought many changes, including an opportunity for the Kemak family to move back to North Carolina. Kelly is currently working as a clinical cancer genetic counselor at the Novant Health Cancer Institute in Charlotte NC. She has enjoyed the opportunity to serve as a clinical supervisor to genetic counseling students and looks forward to expanding access to cancer genetic counseling to underserved communities in the Charlotte area. Kelly is happy to be back in NC! In her free time she enjoys reading, throwing pottery, and exploring Charlotte with her husband Zach and their dogs, Chance and Enzo.