Transferring young people with profound intellectual and multiple disabilities from pediatric to adult medical care: parents' experiences and recommendations.
Parents say the move from pediatric to adult care feels like falling off a cliff—keep their trusted style and add a clear coordinator.
01Research in Context
What this study did
Researchers asked Dutch parents about moving their teens with profound intellectual and multiple disabilities from children's hospitals to adult clinics.
They used a survey. Parents shared what went well and what went wrong.
What they found
Parents liked the close, friendly care their kids got in pediatrics. They felt the switch to adult services was rushed and poorly planned.
Many young adults had no care coordinator after the move, even though their complex health needs stayed the same.
How this fits with other research
Schaaf et al. (2015) heard the same worry from U.S. families of autistic teens. Both studies show parents feel lost during health-care hand-offs.
Stephens et al. (2018) reviewed the whole field and found almost no studies that keep culturally diverse families involved during transition. The Dutch survey is one of the few voices included.
Ruble et al. (2019) found that when parents stay active and team up with teachers, students with autism meet more post-school goals. That same parent push could help in medical transitions too.
Why it matters
If you serve teens with profound needs, expect families to fear losing their pediatric safety net. Start transition talks early, keep a single point of contact, and copy the warm, family-centered style parents praise. Your plan can prevent the drop in care they dread.
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02At a glance
03Original abstract
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.
Intellectual and developmental disabilities, 2013 · doi:10.1352/1934-9556-51.3.176