About the Study
Who can participate?
Black and Hispanic women of any age, who have a child with Fragile X syndrome, may be eligible to participate.
What will happen in the study?
Participants will complete a 30-minute interview about their experiences caring for a child with Fragile X syndrome. Interviews will be conducted over the phone, on Zoom, or through WhatsApp. Interview questions will focus on caregiver experiences and the supports and barriers faced.
What are the good things that can happen from this research?
This research will foster a deeper understanding of the challenges, needs, and research priorities specific to Black and Hispanic women who are raising children with Fragile X syndrome. We hope that this study will promote diverse representation and inclusivity in research, and inform better clinical care practices.
What are the bad things that can happen from this research?
Participating in the interview may involve discussing personal experiences and opinions, which could be uncomfortable or emotional for some women. We strive to create a comfortable environment and participants have the right to skip questions or withdraw from the study at any time.
Will I or my child be paid to complete this study?
Participants receive $20 for completing the study.