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ERIC Number: EJ1015866
Record Type: Journal
Publication Date: 2013-Jun
Pages: 14
Abstractor: As Provided
ISSN: ISSN-1934-9556
Transferring Young People with Profound Intellectual and Multiple Disabilities from Pediatric to Adult Medical Care: Parents' Experiences and Recommendations
Bindels-de Heus, Karen G. C. B.; van Staa, AnneLoes; van Vliet, Ingeborg; Ewals, Frans V. P. M.; Hilberink, Sander R.
Intellectual and Developmental Disabilities, v51 n3 p176-189 Jun 2013
Many children with profound intellectual and multiple disabilities (PIMD) now reach adulthood. The aim of this study was to elicit parents' experiences with the transfer from pediatric to adult medical care. A convenience sample of 131 Dutch parents of young people with PIMD (16--26 years) completed a web-based questionnaire. Twenty-two percent of the young persons were still in pediatric care; 22% of the others had no care coordinator, although their health needs were the same. Parents valued the care provided by the pediatrician, and wished to see it continued. They were critical about how they had been prepared for transfer to adult care. Parents provided suggestions to improve transitional care, such as early start, information provision, and a joint consultation between pediatric and adult care.
American Association on Intellectual and Developmental Disabilities. P.O. Box 7065, Lawrence, KS 66044-7065. Tel: 785-843-1235; Fax: 785-843-1274; e-mail:; Web site:
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Netherlands
Grant or Contract Numbers: N/A