Understanding and Enhancing the Medical Experience
A team of researchers at University of California, Los Angeles are conducting research to better understand the experiences of patients and their families with Angelman syndrome when interacting with the medical system.
The goal of this research is to develop themes of barriers and facilitators to improved care, and to help in the development of an intervention to help teach physicians more about the experience.
Eligibilty
- Be the caregiver of an individual diagnosed with Angelman syndrome
- Willing to participate in a 1-hour focus group
Participation
- Participate in a 1-hour virtual focus group (with your individual if they are willing) to answer questions about your positive and negative healthcare experiences
- You can conduct the focus group fully in your own location, so long as you feel safe and comfortable discussing your child’s medical care in that location
- The types of questions that will be asked include common behaviors of your child, triggers for anxiety in your child, positive and negative healthcare experiences in the clinic and in hospitals, and experiences with healthcare providers that have been both positive and negative
- You may be asked to participate in a follow-up survey if more questions develop based on the focus groups
- You may be contacted after the focus group, if you are interested in participating in the intervention within future medical visits
- You’ll receive a $25 Gift Card following your participation
To get Started
Complete the Participant Interest Form
More Information
Questions about this study can be directed to AngelmanStudyUCLA@mednet.ucla.edu.
The Angelman Syndrome Foundation does not endorse any clinical trial or study, but provides information to the AS community for its own consideration.