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[The value of experts-by-experience support in outpatient care]
Vincent J T Peters1,2, A M Lisa de Hoog1, Helma B M van Gameren-Oosterom3
1Tilburg University, afd. Information Systems and Operations Management, Tilburg.
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.
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