Schouders onder de ouders

Objective

To explore the experiences of experts-by-experience (parents of a child with Down syndrome) involved in outpatient care; of healthcare professionals collaborating with them; and of parents of children with Down syndrome receiving outpatient care.

Design

Semi-structured interviews and observations.

Method

Data were collected through four interviews with experts-by-experience, seven with healthcare professionals, and seven with parents of children with Down syndrome, all connected to the downteam. Observations were conducted during downteam visits. Interview transcripts were thematically analyzed.

Results

Experts-by-experience act as a bridge between healthcare professionals and parents, improving the quality of care and quality of life for children and families. Their support extended beyond medical care to social-emotional and practical aspects of daily living.

Conclusion

Experts-by-experience make a unique contribution to outpatient care. Their lived experience makes them valuable partners in improving both the quality of care and life for children with Down syndrome and their families.

Conflict of interest and financial support: ICMJE forms provided by the authors are available online along with the full text of this article.