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Delineating family needs in the transition from hospital to home for children with medical complexity: part 2, a phenomenological study.

L van de RietMattijs W AlsemR S I BeijneveldJ B M van WoenselClara D M van Karnebeek
Published in: Orphanet journal of rare diseases (2023)
The H2H needs and experiences reported by the CMC families in this study align with the results of our systematic review. The H2H transition process is not linear but continuous, and should extend beyond the specific medical needs of the CMC to holistic care for the family as a whole. The overarching care needs and experiences, expressed by all CMC families, regardless of underlying symptoms and diagnoses, inform the H2H care pathway and its future evaluation. Our studies highlight the necessity to focus on the family needs rather than on the specific illness of the child, as well as the value of our interdisciplinary care team partnering with parents in the 'Jeroen Pit Huis' towards a safe and sustainable transition home.
Keyphrases
  • healthcare
  • palliative care
  • systematic review
  • quality improvement
  • mental health
  • pain management
  • affordable care act
  • emergency department
  • randomized controlled trial
  • meta analyses
  • physical activity
  • current status