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Parental perspectives on research for Down syndrome
Amanda Nicole White1,2, Marly Chevette3, Hampus Hillerstrom3
1Graduate School of Leadership and Change, Antioch University, Yellow Springs, Ohio, USA.
Journal of Applied Research in Intellectual Disabilities : JARID
|September 12, 2021
Summary
Parents are willing to participate in Down syndrome research but face barriers. Their input can guide future studies and recruitment strategies to improve health outcomes for individuals with Down syndrome.
Area of Science:
- Genetics
- Developmental Disabilities
- Clinical Research
Background:
- Down syndrome is the most prevalent genetic disorder causing intellectual and developmental disabilities.
- Research for Down syndrome lags behind other conditions due to funding, recruitment, and study availability challenges.
Purpose of the Study:
- To understand parent perceptions of research in Down syndrome.
- To identify barriers to research participation and desired research topics.
Main Methods:
- Survey administered to 228 parents of individuals with Down syndrome.
- Inquired about research perceptions, study design preferences, information seeking, and research interests.
Main Results:
- 72% of parents expressed willingness to participate in research, but only 36% had done so.
- Identified key barriers to participation and specific research areas, including new therapies and drug studies.
- Parents of children aged 18 years and younger responded to the survey.
Conclusions:
- Parental insights are crucial for shaping future Down syndrome research agendas.
- Recommendations for improved study design and recruitment strategies can enhance research participation.
- Addressing identified barriers and interests can accelerate progress in improving health outcomes for individuals with Down syndrome.
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