Factors Influencing the Implementation of Transitional Care for Adolescents With Profound Intellectual and Multiple Disabilities: Experiences of Dutch Healthcare Professionals
Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR
Published online on March 13, 2026
Abstract
["Journal of Intellectual Disability Research, EarlyView. ", "\nABSTRACT\n\nBackground\nThe 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.\n\n\nMethods\nSemi‐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.\n\n\nResults\nTransitional 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.\n\n\nConclusions\nSuccessful 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.\n\n"]