ABSTRACT
Background
Hospital-to-home (H2H) transitions of children with medical complexity (CMC) are a multifaceted process with many challenges and obstacles, especially for parents. The ‘Jeroen Pit Huis’ (JPH) is a stand-alone, innovative transitional care unit (TCU) that aims to improve the transition home. This study explored parents’ experiences with the H2H transition via the JPH TCU setting, including the facilitators and barriers that shaped this process.
Methods
A qualitative study using semistructured interviews was conducted between January and November 2023. Interviews were audio recorded and transcribed verbatim and analysed thematically. Data collection continued until thematic saturation was reached.
Results
Twenty-one parents (13 mothers and 8 fathers) of 14 CMC participated in 14 interviews. Inductive thematic analysis identified the following five interrelated processes shaping parental experiences: regaining control and confidence, emotional recovery and resilience, relational dynamics and family adaptation, navigating care systems, as well as child well-being and development. Across these processes, parents reported key facilitators—grouped into the following four domains: TCU supportive environment, professional guidance and continuity, family and peer empowerment, as well as coordinated care systems. At the same time, barriers were described across four domains: privacy and boundaries, emotional and psychological strain, family equity challenges, as well as systemic and practical barriers.
Conclusion
Parents experienced H2H transition via the TCU valuable for the well-being and development of both their child and family. By capturing both facilitators and barriers, this study underscores the opportunities and challenges of a stand-alone TCU and provides insights to inform the development of transitional care for CMC.