Table 1.

Semi-structured Interview Guide

Interview Questions	Probing Questions
1. Tell us about your diagnosis experience starting from when you first recognized any problems to when you got the diagnosis of fragile X syndrome for your child.	What were some of the first symptoms that you noticed? What doctors did you see? What doctor gave you the diagnosis of FXS?
2. What part of the whole process of receiving a diagnosis did you think went the smoothest?
3. What were the barriers in the process?
4. What part of the process was the most challenging?
5. How did you feel when your child was given a diagnosis of fragile X syndrome?
6. Tell us about any support you received when you first got the diagnosis?	What role did you family play in the support you received? What role did your friends play in the support you received? Did you receive support from other types of organized groups?
7. Describe any experience you may have gone through to get information about fragile X syndrome.
8. If you could change anything about the process of getting a diagnosis of fragile X syndrome, what would you change?
9. Is there anything else you would like to tell us about your experience that might help us assist other families in the future?