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

ABSTRACT: 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 m

SUBMITTER: Peters VJT 

PROVIDER: S-EPMC12521312 | biostudies-literature | 2025 Oct

REPOSITORIES: biostudies-literature