Survey 2: Impact of COVID-19 on Medical Supports and Caregiver Mental Health

By: Wendy Chung, M.D., Ph.D., Principal Investigator of Simons Searchlight

Thank you to all of the Simons Searchlight families who once again took the time to share how COVID-19 has been affecting their daily lives. We will continue to follow our community through surveys as this situation evolves.

Our findings are summarized below. The document may be downloaded as a picture (PNG) or as a printer-friendly document (PDF).

Who participated in Survey 2?

391 Simons Searchlight caregivers completed the follow-up survey, which was launched in May 2020. Most caregivers were female, living in the U.S. with dependents who were mostly male and between the ages of 7 months and 45 years. Survey respondents lived in 28 different countries, and 60 different genetic conditions were represented.

What was different in May 2020?

We learned that most families around the world were still experiencing a disruption in services for their children, and at the time of the survey, most families had 47 days on average of service disruption. Specific services are listed in the image above. Most caregivers said that they were now responsible for providing at least some part of therapy for their dependents. Few caregivers felt that online therapies were beneficial for their dependent, except for specific medical services. Only 57 percent of dependents were receiving services remotely in April 2020, but by May 2020, 70 percent of dependents were getting therapies, services, or medical supports online.

Parent and guardian’s mental health

Despite many caregivers feeling overwhelmed and concerned by service disruptions, the majority described their overall mental health as good to excellent and reported that they were feeling hopeful. Finally, caregiver feelings of nervousness, anxiety, or being on edge decreased since the first survey.

Simons Searchlight will soon publish the findings from this survey.

Survey 1 summary “Impact of COVID-19 on Therapies, Services, and Medical Supports” can be found here.