Delineating family needs in the transition from hospital to home for children with medical complexity: part 1, a meta-aggregation of qualitative studies.
L van de RietM W AlsemE C van der LeestF S van Etten-JamaludinJ M MaaskantJ B M van WoenselClara D M van KarnebeekPublished in: Orphanet journal of rare diseases (2023)
Despite the variability in CMC symptoms and underlying (rare disease) diagnoses, overarching themes in parental needs during H2H transition emerged. We will augment this new knowledge with an interview study in the Dutch setting to ultimately translate into an evidence-based tailored care pathway for implementation by our interdisciplinary team in the newly established 'Jeroen Pit Huis', an innovative care unit which aims for a safe and sustainable H2H transition for CMC and their families.