Survey 5: Updates, One Year After the Start of the COVID-19 Pandemic

Wendy Chung, M.D., Ph.D., Principal Investigator of Simons Searchlight
Date Published: August 26, 2021

We hope that everyone had a safe summer, and thank you to the families who have shared their experiences with us. With the upcoming availability of the COVID-19 vaccine for children under 12, many of you have questions about the safety of COVID-19 vaccines in the neurodevelopmental and rare disease community. You can review our guidance about the COVID-19 vaccine for people with rare diseases here.

Our findings of how the Simons Searchlight caregivers feel about the COVID-19 vaccine are summarized below.

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What did we find in survey 5?

We found that most caregivers reported having interest in receiving a COVID-19 vaccine at the time of the survey (June 2021). There was increased interest as compared to survey 4 (November 2020), during a time when the COVID-19 vaccine was not yet publicly available. People who were unsure would like more time for safety and efficacy. Notably, 87 percent of households had someone vaccinated for COVID-19.

Only 6 percent of people with a genetic condition had tested positive for COVID-19 (16 out of 255). Although, most caregivers knew someone outside of their household who tested positive for COVID-19. At the time of the survey, 56 people with the genetic condition had received a COVID-19 vaccine.

In June 2021, more caregivers were experiencing improved emotional or mental health and feeling hopeful for the future. Also, caregivers reported a decline in concern of the impact of the COVID-19 pandemic. Caregivers continued to avoid crowded places and wearing a mask when necessary.

Archived COVID-19 survey summaries:

• Survey 1 summary “Impact of COVID-19 on Therapies, Services and Medical Supports” can be found here.
• Survey 2 summary “Impact of COVID-19 on Medical Supports and Caregiver Mental Health” can be found here.
• Survey 3 summary “Development and Mental Health during COVID-19” can be found here.
• Survey 4 summary “Access to Education, Therapies and Services during COVID-19” can be found here.