Research & Findings
Questions we're exploring.
Data.
Collection.
Underway.
Data. Collection. Underway.
Current Research
The First Voice Project is currently gathering survey responses from parents who received a Down syndrome diagnosis.
Our goal is to better understand:
How diagnoses are communicated
The role of statistics and medical framing
Sources of information parents trust most
Factors that influence parental perceptions and decision-making
The experiences families wish healthcare providers understood
What We Hope to Learn
We are exploring questions such as:
How much influence do trusted medical professionals have on parental perceptions following a diagnosis?
How do prior experiences with parenting, disability, neurodiversity, or special needs shape decision-making?
For parents who choose to continue with their pregnancy, how did outcomes after birth compare to prenatal expectations?
How does the method of diagnosis delivery impact the parent experience?
Which sources of information are most influential during the first days after diagnosis?
What do families wish they had known?
Research Themes
The Weight of Words
How diagnoses are delivered and how families experience those initial conversations.
The Space Between
The critical period between diagnosis and decision-making.
Every Voice
Understanding experiences across all outcomes—including continuation, adoption, pregnancy loss, and termination—to better understand how families process information, seek support, and make decisions.
The Gap
Understanding the differences between what families expected and what they ultimately experienced.
Future Publications
As data becomes available, findings may be shared through:
Survey reports
Research summaries
Parent stories
Educational resources
Presentations and publications
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