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An Innovative Transitional Care Unit for Hospital to Home Transition of Children With Medical Complexity: A
Heleen N Haspels1,2,3,4, Nicole Skomorowski5, Koen F M Joosten3,4
1Department of Pediatric Intensive Care, Amsterdam UMC, location AMC, Amsterdam, the Netherlands.
Insights
Parents found the transitional care unit (TCU) valuable for hospital-to-home (H2H) transitions of children with medical complexity (CMC). The study identified key facilitators and barriers to improve future care strategies.
Area of Science:
- Pediatric healthcare
- Transitional care
- Family-centered care
Background:
- Hospital-to-home (H2H) transitions for children with medical complexity (CMC) present significant challenges for families.
- The Jeroen Pit Huis (JPH) is an innovative, stand-alone transitional care unit (TCU) designed to enhance these transitions.
Purpose of the Study:
- To explore parents' experiences with H2H transitions facilitated by the JPH TCU.
- To identify facilitators and barriers impacting the transition process for CMC.
Main Methods:
- Qualitative study employing semistructured interviews with parents of CMC.
- Thematic analysis of interview data until thematic saturation was achieved.
Main Results:
- Twenty-one parents participated in 14 interviews.
- Five key processes emerged: regaining control, emotional recovery, family adaptation, navigating systems, and child well-being.
- Facilitators included TCU support, professional guidance, family empowerment, and coordinated systems.
- Barriers involved privacy issues, emotional strain, family equity, and systemic challenges.
Conclusions:
- The TCU setting was perceived as beneficial for child and family well-being during H2H transitions.
- Understanding facilitators and barriers informs the development of effective transitional care models for CMC.
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.
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