Talkin’ about a revolution: integrating parents of children with Down syndrome as experts-by-experience in pediatric outpatient care

This study explores the role of parents of children with Down syndrome as experts-by-experience in pediatric outpatient care, a setting where their integration remains understudied, despite growing evidence of their value in other healthcare settings. We conducted a qualitative, exploratory interview study and took the outpatient care provision for children with Down syndrome as our setting. We conducted 18 interviews with healthcare professionals, parents of children with Down syndrome, and experts-by-experience. We utilized thematic analysis to analyze our data. We find that experts-by-experience act as a bridge between healthcare professionals and parents and improve the quality of care and life for children with Down syndrome and their families by offering support that extends beyond medical care into the social-emotional and practical aspects of daily living. Conclusion: Experts-by-experience offer unique contributions to pediatric outpatient care. Their lived experience makes them valuable contributors to improve the quality of care and life. We call for every outpatient multidisciplinary team to integrate experts-by-experience as standard practice. What is Known: • Experts-by-experience are increasingly recognized as valuable contributors in healthcare settings, offering unique perspectives that can enhance care provision. What is New: • The involvement of parents as experts-by-experience in pediatric outpatient care improves the quality of care and quality of life for children and their parents.