Nederlands tijdschrift voor geneeskunde · 2026
[The value of experts-by-experience support in outpatient care].
Аннотация на английскомСтатьяНазвание и аннотация: Перевод в очереди
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Peters Vincent J T, de Hoog A M Lisa, van Gameren-Oosterom Helma B M, de Winter J Peter, Eulderink Tineke, Bok Levinus A
Аннотация
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.
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.