Can parents help improve study tools for their child's neurodevelopmental condition?
Parents play a key role in shaping research tools for their child's neurodevelopmental condition. By participating in co-design workshops, families can help researchers create study materials that are more acceptable, practical, and tailored to real-world needs. This approach has been used successfully in studies involving rare genetic conditions and neurodevelopmental disorders.
What the research says
A 2024 study on the Sleep Detectives project showed that co-design workshops with parents and children improved the acceptability of sleep monitoring devices and cognitive tasks for young people with neurodevelopmental copy number variants (CNVs) 4. Parents and children provided feedback on study protocols, helping researchers refine tools to be more family-friendly 4. This kind of patient and public involvement (PPI) ensures that research methods are practical and less burdensome for families 4.
Other research highlights the importance of involving families in developing assessment tools. For example, the Autism Behavior Assessment Scale (ABAS) was developed with input from parents and professionals in Türkiye, resulting in a culturally adapted tool with strong reliability 10. Similarly, a review of digital resources for child neurodevelopment found that many apps and tools exist, but few have been co-designed with families, suggesting room for improvement 9.
While not all studies involve parents in tool design, the evidence shows that when families are engaged, research tools become more relevant and effective. For instance, a Delphi consensus on ADHD transition care emphasized involving families in planning and monitoring 8. Overall, parent involvement can enhance the quality and impact of study tools for neurodevelopmental conditions.
What to ask your doctor
- Are there any research studies or clinics that involve parents in designing study tools or treatment plans for my child's condition?
- How can I provide feedback on the tools or assessments used in my child's care to make them more helpful?
- Are there local or online parent advisory groups that help shape research for neurodevelopmental conditions?
- What are the benefits and time commitments of participating in co-design workshops for research studies?
- Can you recommend any digital resources or apps that were developed with input from families like mine?
This question is drawn from common patient questions about Neurology and answered using cited medical research. We do not provide individualized advice.