Genetic Counseling

School of Health and Human Sciences

Experience of Youth and Families with Special Healthcare Needs in Transition to Adult Healthcare Services
Capstone Project Committee: Randi Stewart, MS, CGC, Carolina Hacker, Pamela Reitnauer, MD
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.
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