Stakeholder Engagement in Pediatric Disability Research: Why and How to do it

Key Takeaways: To study child health, researchers must also study child disability. Research to improve child outcomes necessarily considers those with disabilities early in their developmental trajectories, to identify modifiable factors and drive interventions that promote health throughout the lifespan. However, this can be challenging to implement. In this presentation, we demonstrate how quantitative and qualitative research can inform the design, outcomes, recruitment, and retention of children with disabilities and their families, with a special focus on often-overlooked physical disabilities. The example of the ECHO 301 project will be highlighted.

Nathalie Maitre, MD, PhD

Director of Early Development & Cerebral Palsy Research,

Emory University School of Medicine

Speaker Biography:

Nathalie Maitre, MD, PhD, is a Professor of Pediatrics, Pediatrician and Neonatologist at Children’s, and Director of Early Development and Cerebral Palsy Research. Dr. Maitre’s research spans from neuroscience to clinical trials to implementation. Examples range from studying the brain of a single child to global health and transforming healthcare systems throughout the world. Her NIH-funded neuroscience research looks at the mechanisms of how the brain recovers after injury and what interventions she can design: by leveraging and developing new technologies and by involving parents in interventions. These approaches all leverage the neuroplasticity of the baby brain to help infants recover function and have more healthy and happy developmental trajectories into childhood. It’s important for Dr. Maitre’s research to have families as stakeholders to design studies, choose outcomes, and to voice what matters to them when participating in interventions.

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