Becoming Visible: Exploring the College Experiences of Women with Fragile X Syndrome in the United States

  • Condition: Fragile X Syndrome
  • Age: Adult 18+
  • Sex: Female

This research study explores the academic, social, and emotional experiences of women with Fragile X syndrome in college and university settings. Women ages 18–30 who are currently enrolled in postsecondary education or graduated within the past five years are invited to share their experiences and perspectives.

About the Study

Who is eligible to participate in the study?

Females who meet the following criteria may be eligible:
Are between 18 and 30 years old.
Have a full mutation diagnosis of Fragile X syndrome.
Are currently enrolled in a college or university program or graduated within the past five years.

Individuals enrolled in inclusive postsecondary transition programs designed to provide life and vocational skills for students with intellectual disabilities are not eligible.

What will happen in the study?

The entire study process will take approximately 2–3 hours. Participants will be asked to complete four activities:

  • Background questionnaire: 30–45 minutes.
  • One-on-one interview: 45–60 minutes, conducted in person or through Zoom. The interview will be audio- and video-recorded.
  • Three journal prompts: 30–45 minutes.
  • Review of study findings: 15–30 minutes to review the identified themes and confirm that they accurately reflect participants’ experiences.

Names and other identifying information will be collected as part of the research; however, participants’ identities will remain confidential and will not be disclosed.

Will I or my child be paid to be in the study?

Participants will receive a $20 Amazon gift card in appreciation of their time and contributions to the study.

Who do I contact to learn more about the study?

This study is being conducted by Marcae Robertson, a doctoral student in the School of Education at Liberty University.

To learn more or discuss eligibility, please contact Marcae:

  • Phone: 612-269-1282
  • Email: mrobertson68@liberty.edu