Publications by authors named "Chelsea M Withers"
Am J Med Genet A
January 2021
Article Synopsis
- - Parents of children diagnosed with Rubinstein-Taybi syndrome (RTS) shared their experiences through interviews, revealing the emotional challenges linked to receiving a diagnosis for a rare genetic condition.
- - The timing of the diagnosis was crucial; parents felt that the best time for a diagnosis should occur after initial bonding but before significant parental concerns arise, allowing for emotional balance.
- - While parents sought a diagnosis to alleviate uncertainty, they found that new concerns emerged after diagnosis, emphasizing the importance of a label in improving social acceptance and access to necessary resources.
