DEE Parents Speak survey

Between Summer and Fall of 2023, we launched the DEE Parents Speak survey. We had 267 caregivers very generously give their time to complete this 2-part survey. We are working diligently to analyze and share results as quickly as possible. Keep scrolling to see an overview of the survey results!

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Survey Results

Overview

Caregivers of children with severe to profound impairments responded to our DEE Parents Speak survey. These responses are directly helping us develop measures to capture clinical trial outcomes.  This page contains an overview of the project so far, general results, and a breakdown by disease groups. If you have specific questions or want to get involved in research, email us at inchstones@deepconnections.net

Sex (proportion female)
%
Epilepsy Diagnosis
%
Autism Diagnosis
%
Unique disease groups

Good days

word cloud describing what a good day looks like for DEE caregivers. The most common words are laugh, smile, engaged, alert, calm

Bad days

a word cloud of what caregivers of DEE children see during a bad day. The most common words are screaming, sleeping, crying, and lethargic.

Caregiver Priorities

Caregivers were asked, "If you could improve just one aspect of your child's condition of those listed below, what would you choose?"

Expressive Communication
%
Gross Motor Skills
%
Receptive Communication
%
Behavior
%

Disease Specific Dashboards

All Publications

Check out our recent publications and easy to digest summaries of each!

Newsletter

Sign up for our brand new Inchstone newsletter for more insight into the project, details on our current work, and opportunities to engage.

Partner with Us

If you like what you see, we'd love to chat more about options to get involved and help move this work forward!

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