Potential Supportive Role of a Genetic Counselor

Caregiver Perspectives Wanted RESEARCH STUDY Transition of care and the potential supportive role of a genetic counselor This study is recruiting caregivers to complete an anonymous survey understanding transition of care from pediatric to adult for individuals with neurodevelopmental disorders to learn about perceived needs and barriers and assess perspectives on if genetic counselor involvement could be supportive. Participants also have an opportunity to engage in a follow-up interview Who Can Participate? INTERESTED? What is involved? Caregiver of individual with: Autism, ADHD, genetic conditions Anonymous 10-15 minute survey Opportunity to do a follow-up interview questions? email Allison Kaiser at akaiser@mcw.edu Participants are eligible to enter to win one of ten $20 gift cards AND one of fifteen $20 gift cards if follow-up interview is completed

The study is looking to understand what parents and caregivers of individuals with neurodevelopmental conditions think about having a genetic counselor and as a resource when moving from pediatric healthcare to adult health care. We want to understand if a genetic counselor could make this change easier for the individual and their caregiver. By listening to the caregiver perspective, we hope to find out if genetic counselors could be supportive during the transition process.

My target study population is caregivers of individuals with a neurodevelopmental condition as defined by the DSM-5 or to their knowledge or based on their perception of what a neurodevelopmental condition is. Participants must reside in the US and feel comfortable completing a survey and/or a follow-up interview in English. Participants will not be excluded based on gender or identity