Transferring Young People With Profound Intellectual and Multiple Disabilities From Pediatric to Adult Medical Care: Parents' Experiences and Recommendations

被引：48

作者：

Bindels-de Heus, Karen G. C. B. ^{[1
]}

van Staa, AnneLoes ^{[2
]}

van Vliet, Ingeborg ^{[3
]}

Ewals, Frans V. P. M. ^{[4
]}

Hilberink, Sander R. ^{[3
]}

机构：

[1] Erasmus MC Univ Med Ctr, Sophia Childrens Hosp, Dept Pediat, NL-3015 GJ Rotterdam, Netherlands

[2] Erasmus Univ, Rotterdam, Netherlands

[3] Rotterdam Univ, Rotterdam, Netherlands

[4] Erasmus MC Univ Med Ctr Rotterdam, Rotterdam, Netherlands

来源：

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES | 2013年 / 51卷 / 03期

关键词：

medical care; transition; adolescent; parents; severe generalized cerebral palsy; intellectual disability; unmet needs; GROSS MOTOR FUNCTION; HEALTH-CARE; CEREBRAL-PALSY; TRANSITION; CHILDREN; PREVALENCE; YOUTH; MODEL;

D O I：

10.1352/1934-9556-51.3.176

中图分类号：

G76 [特殊教育];

学科分类号：

040109 ;

摘要：

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 (1626 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.

引用

页码：176 / 189

页数：14

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