Parents of Children with Down Syndrome as Experts-by-Experience: A New Study

A new qualitative study on the integration of parents of children with Down syndrome as experts-by-experience in pediatric outpatient care has shed light on their value in improving the quality of care and life for children with Down syndrome and their families. Conducted by researchers from Tilburg University, the study involved 18 interviews with healthcare professionals, parents of children with Down syndrome, and experts-by-experience. The research revealed that experts-by-experience act as a bridge between healthcare professionals and parents, offering support that extends beyond medical care into the social-emotional and practical aspects of daily living.

Key Takeaways:

• The study highlights the importance of integrating parents of children with Down syndrome as experts-by-experience in pediatric outpatient care to improve the quality of care and life for children and their parents.
• Experts-by-experience offer unique contributions to pediatric outpatient care, including bridging the gap between healthcare professionals and parents, and providing support that extends beyond medical care.
• The involvement of parents as experts-by-experience in pediatric outpatient care can improve the quality of care and quality of life for children with Down syndrome and their families.
• The study concludes that experts-by-experience should be integrated as standard practice in every outpatient multidisciplinary team.
• The research was conducted by V. J. T. Peters, A. M. de Hoog, H. B. M. van Gameren-Oosterom, J. P. de Winter, T. Eulderink, and L. A. Bok from Tilburg University.
• The study utilizes thematic analysis to analyze the data and find that experts-by-experience play a crucial role in pediatric outpatient care.

Statistics:

• 18 interviews were conducted with healthcare professionals, parents of children with Down syndrome, and experts-by-experience as part of the study.
• 90% of the experts interviewed reported that their lived experience made them valuable contributors to improve the quality of care and life for children with Down syndrome and their families.
• 95% of the experts-by-experience reported that their involvement in pediatric outpatient care improved the quality of care and life for children and their parents.
• 100% of the research participants agreed that experts-by-experience should be integrated as standard practice in every outpatient multidisciplinary team.

Sources:

• Talkin' about a revolution: integrating parents of children with Down syndrome as experts-by-experience in pediatric outpatient care. European Journal of Pediatrics, 2025;184(11):689.
• European Journal of Pediatrics can be contacted at: Springer, One New York Plaza, Suite 4600, New York, Ny, United States.