When children with special healthcare needs approach adulthood, their medical, social, and educational services change, and often these individuals lose their entitlements to special needs education and social services. The time period in which a child undergoes these changes into adulthood is called the transition phase. The goal of our study was to better understand the role that genetic counselors play in helping patients and their families with transition planning. We sent a survey of quantitative and open-ended questions to pediatric and specialty genetic counselors through the NSGC listserv and received 85 responses. We assessed how often genetic counselors were being asked about specific transition topics, how they were responding to these questions, and what challenges they encountered while providing transition planning services. Our results show that the most frequently asked about transition topic was the child’s prognosis and future health care needs; the topic least frequently asked about was guardianship. Respondents were most comfortable answering questions about the child’s future prognosis and health care needs, and were most likely to refer questions on future insurance coverage and guardianship to others. We found that the transition discussion is standard procedure for many pediatric clinics and that some genetic counselors initiate the discussion when the family is unaware that a transition is approaching. Common challenges faced by respondents when providing transition planning include: a lack of appropriate adult genetics services, parent or patient reluctance to transition from current care, and counselor uncertainty in how to best help the patient. Our research showed that pediatric and specialty genetic counselors are being involved in conversations about transition planning. The development of institutional resources and training to familiarize genetic counselors with local transition services and regulations is recommended to help genetic counselors expand their ability to help their patients and families with transition planning.
- Now What Happens? An Exploration of the Genetic Counselor’s Role in Transition Planning
- Danielle Hays
- Judith Tsipis (Advisor)
- Brandeis University, Graduate School of Arts and Sciences; Master of Science (MS)
- Master of Science (MS), Brandeis University, Graduate School of Arts and Sciences
- Brandeis University
- Brandeis University, Graduate School of Arts and Sciences
- 10192/32293; 9923879977401921
- Copyright by Danielle Hays 2016
- Interdepartmental Program in Genetic Counseling
- English
- Thesis