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

被引：50

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

共 33 条

[1] [Anonymous], INT CLASS FUNCT DIS
[2] Transition for Teenagers With Intellectual Disability: Carers' Perspectives
Bhaumik, Sabyasachi
Watson, Joanna
Barrett, Mary
Raju, Bala
Burton, Tracey
Forte, Jane
[J]. JOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES, 2011, 8 (01) : 53 - 61
[3] What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida
Binks, Jessie A.
Barden, Wendy S.
Burke, Tficia A.
Young, Nancy L.
[J]. ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION, 2007, 88 (08): : 1064 - 1073
[4] Bruin G., 2008, THESIS ROTTERDAM U R
[5] Transition to Adult Care for Children with Chronic Neurological Disorders
Camfield, Peter
Camfield, Carol
[J]. ANNALS OF NEUROLOGY, 2011, 69 (03) : 437 - 444
[6] Strategies for transitioning to adult care for youth with Lennox-Gastaut syndrome and related disorders
Camfield, Peter R.
Gibson, Patricia A.
Douglass, Laurie M.
[J]. EPILEPSIA, 2011, 52 : 21 - 27
[7] Eight Years of Specialist Training of Dutch Intellectual Disability Physicians: Results of Scientific Research Education
Evenhuis, Heleen M.
Penning, Corine
[J]. JOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES, 2009, 6 (04) : 276 - 281
[8] Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness
Graneheim, UH
Lundman, B
[J]. NURSE EDUCATION TODAY, 2004, 24 (02) : 105 - 112
[9] "You Have to Sit and Explain it All, and Explain Yourself." Mothers' Experiences of Support Services for Their Offspring with a Rare Genetic Intellectual Disability Syndrome
Griffith, Gemma Maria
Hastings, Richard P.
Nash, Susie
Petalas, Michael
Oliver, Chris
Howlin, Patricia
Moss, Joanna
Petty, Jane
Tunnicliffe, Penelope
[J]. JOURNAL OF GENETIC COUNSELING, 2011, 20 (02) : 165 - 177
[10] Inspectie voor de Volksgezondheid (IGZ), 2000, ERNST MEERV GEH OND

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