Study: Focus Group on Difficulty with Changes and Rigid/Inflexible Behaviors in Fragile X Syndrome

Does your child struggle with changes? Are transitions nearly impossible? These challenges could be a result of inflexibility, which is very common in Fragile X Syndrome (FXS).

Dr. Lauren Schmitt, a licensed psychologist, at Cincinnati Children’s Hospital Medical Center is conducting a series of focus groups to learn about behavioral and cognitive inflexibility (i.e., difficulty with changes in routines, difficulty transitioning, repetitive questioning, intolerance to uncertainty, etc.)  in Fragile X syndrome in hopes of developing a new parent-/self-report measure.  

About the Focus Groups

Who can participate?

We are looking for a wide variety of participants. You may be eligible to participate if you are:

• A caregivers of an individual with FXS,
• An individual with FXS (18 years or older and able to talk about own experiences with fluent language),
• A provider for individuals with FXS. Examples of eligible providers could be teachers, psychologists, social workers, and physicians.

What will happen in the study?

If the individual qualifies and decides to participate in this research study, they will complete one online focus group over the next year.

The following is a list of some of the study procedures that will happen during the focus group: 

• Share personal examples of inflexibility.
• Identify different types of inflexibility.
• Provide input on the impact inflexibility has had on family and quality of life.
• Suggest possible items for parent-/self-report measure.

What are the good things that can happen from this research?

Ultimately, the focus group is designed to help form a new parent-/self-report measure of  inflexibility in FXS. This measure may be a useful tool for assessment, development of a treatment plan, and outcome measurement. Self-advocates and caregivers may benefit from the ability to share personal experiences, feel validated in their experiences, and enjoy a sense of community.  

What are the bad things that can happen from this research?

There are minimal risks associated with the study. Due to the personal nature of questions being asked and experiences being shared, it’s possible that participants may become distressed or upset. Loss of confidentiality is always a risk as well. A licensed clinical psychologist will be present at each focus group to ensure participants understand the importance of confidentiality and to provide support and validation when a participant becomes distressed. All participants will be reminded they can stop participating at any time.

There may be other risks that we do not know about yet.  

Will you/your child be paid to complete this survey?

Participants receive $30 for their participation in the focus group.  

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