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Destination unknown: Parents and healthcare professionals' perspectives on transition from paediatric to adult care in Down syndrome

Peters,Vincent
; 
Bok,Vinus
; 
de Beer,Lieke
; 
van Rooij,Joyce
; 
Meijboom,Bert
; 
Bunt,J. E. H.
Abstract
Background Transitioning from paediatric medical care to adult care is a challenging process for children, parents and healthcare professionals. The aim of this study was to explore the experiences, concerns and needs of parents of children with Down syndrome and of professionals regarding this transition. Method A qualitative study was performed using semi-structured interviews with 20 parents of children with Down syndrome and six healthcare professionals. Results We showed that parents and professionals have concerns during each of the three distinct phases of transition (preparation, transfer and integration). Data disclose specific concerns regarding communication, continuity of care and rebuilding trust. We propose a framework for the transition to adult care. Conclusions The transition in medical care for children with Down syndrome should be flexible, patient-centred and coordinated together with patients and parents. Only in ensuring continuity of care will individuals with Down syndrome not get lost in transition.
Description
Funding Information: The authors would like to thank all the parents of children with Down syndrome and the healthcare professionals involved for their kind participation in the study. Publisher Copyright: © 2022 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.
Date
2022-09
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Tilburg University Research Output Collection
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Keywords
Down syndrome, adult care, paediatric care, qualitative research, service provision, transition
Citation
Peters, V, Bok, V, de Beer, L, van Rooij, J, Meijboom, B & Bunt, J E H 2022, 'Destination unknown: Parents and healthcare professionals' perspectives on transition from paediatric to adult care in Down syndrome', Journal of Applied Research in Intellectual Disabilities, vol. 35, no. 5, pp. 1208-1216. https://doi.org/10.1111/jar.13015
URI
https://hdl.handle.net/20.500.14602/77387
License
info:eu-repo/semantics/openAccess
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