ArticleEuropean journal of pediatrics2025
Talkin' about a revolution: integrating parents of children with Down syndrome as experts-by-experience in pediatric outpatient care.
Article in European journal of pediatrics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
2 citing papers in PubMed.
- Age limits and shared decision-making in paediatric healthcare: an exploratory survey of the Young European Academy of Paediatrics.European journal of pediatrics · 2026Article
- The organization of pediatric care: the right care, from the right professional, at the right time and place: an editorial update.European journal of pediatrics · 2026Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
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 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.
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Registered trials
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