Factors Influencing the Implementation of Transitional Care for Adolescents With Profound Intellectual and Multiple Disabilities: Experiences of Dutch Healthcare Professionals.
Dutch professionals say person-centred care and continuous parental involvement are key to successful healthcare transitions for teens with profound ID.
01Research in Context
What this study did
Ooms et al. (2026) asked Dutch doctors, nurses, and therapists what helps or blocks good healthcare hand-offs for teens with profound intellectual and multiple disabilities. The team ran open interviews and grouped answers into themes.
What they found
Staff said two things matter most: care must fit the teen's unique needs, and parents must stay in the loop at every step. They listed barriers like lost paperwork, no single point of contact, and adult services that refuse complex cases.
How this fits with other research
Gauthier-Boudreault et al. (2017) heard parents of young adults with profound ID list the same gaps years earlier. The 2026 staff view matches the parent view: systems, not kids, cause most transition trouble.
Kaltner et al. (2014) showed that person-centred reviews boost family talk time in school transitions. Dutch staff now call for the same individualised approach in healthcare, confirming the idea works across settings.
Thom-Jones et al. (2025) surveyed European caregivers and found continent-wide shortages of adult-service preparation. The Dutch barriers are therefore not local quirks; they repeat across countries.
Why it matters
If you write transition plans, build in a named coordinator and invite parents to every meeting. Use plain-language summaries and share them with all teams. These low-cost steps echo what Dutch staff say keeps teens from falling through the cracks.
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02At a glance
03Original abstract
BACKGROUND: The transition from paediatric to adult healthcare is particularly challenging for adolescents with profound intellectual and multiple disabilities (PIMD) and their families. This study aims to identify factors that Dutch healthcare professionals perceived as relevant to successful implementation of transitional care for adolescents with PIMD. METHODS: Semi-structured interviews were conducted with 20 professionals working in paediatric and adult healthcare. Data were analysed using directed content analysis, guided by Flottorp's checklist (2013) on preventing and enabling factors of improvements in healthcare. RESULTS: Transitional care approaches vary at interpersonal, organisational and environmental levels. Enabling factors were parental self-reliance and competencies, a holistic perspective, professional networks, continuity and coordination of care, flexibility to deviate from standards and guidance from nonmedical actors. Preventing factors were family burden and emotions, suboptimal information transfer, insufficient agenda-setting, shortages of expert physicians and legal and administrative challenges. Continuous parental involvement and appropriate financial funding were enabling. The provision of person-centred care was considered essential. CONCLUSIONS: Successful implementation of transitional care for adolescents with PIMD is a multifaceted process characterised by structural and personal challenges. Providing person-centred care increases the likelihood of appropriate transitional care in PIMD-care.
Journal of intellectual disability research : JIDR, 2026 · doi:10.1111/jir.70101