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Destination Unknown: Parents and Healthcare Professionals' Perspectives on Transition from Paediatric to Adult Care in Down Syndrome

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Bibliographic Details
Title: Destination Unknown: Parents and Healthcare Professionals' Perspectives on Transition from Paediatric to Adult Care in Down Syndrome
Language: English
Authors: Peters, Vincent J. T. (ORCID 0000-0002-9777-7777), Bok, Levinus A., de Beer, Lieke, Rooij, Joyce J. M., Meijboom, Bert R., Bunt, Jan Erik H.
Source: Journal of Applied Research in Intellectual Disabilities. Sep 2022 35(5):1208-1216.
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 9
Publication Date: 2022
Document Type: Journal Articles
Reports - Research
Descriptors: Down Syndrome, Parents, Health Personnel, Parent Attitudes, Transitional Programs, Young Adults, Health Services, Emotional Response
DOI: 10.1111/jar.13015
ISSN: 1360-2322
1468-3148
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.
Abstractor: As Provided
Entry Date: 2022
Accession Number: EJ1344379
Database: ERIC
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Description
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.
ISSN:1360-2322
1468-3148
DOI:10.1111/jar.13015