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

Background: A systematic literature review on the transition from hospital-to-home (H2H) of families with a child with medical complexity (CMC), resulted in nine overarching themes. These demonstrated common needs and experiences despite the widely differing CMC diagnoses and family characteristics. However, none of the reported studies was conducted in the Netherlands, which hampers the creation of a tailored H2H care pathway, deemed essential for our recently established Transitional Care Unit in the Netherlands: the ‘Jeroen Pit Huis’. Therefore, the aim of this study was to gain a deeper understanding of the needs and experiences of Dutch CMC parents on H2H transition and integrate these insights with the literature review into an evidence-based H2H care pathway for CMC and their families. Methods: A descriptive phenomenological approach was applied. Heterogeneous purposeful sampling methods were used to recruit participants according to the following criteria: parents of CMC from various regions in the Netherlands, who spoke Dutch fluently and who had been discharged home from a tertiary hospital within the previous five years. Semi-structured, open-ended interviews were conducted via video call by two researchers, who transcribed the audio recordings verbatim. Thematic analysis methods were used to identify emerging themes from the individual transcripts, involving a third and fourth researcher to reach consensus. Results: Between March and August 2021, 14 mothers and 7 fathers participated in 14 interviews. They elaborated on the H2H transition of 14 CMC with a wide range of underlying diseases: 7 male, 7 female, aged 6 months to 10 years. Eight overarching themes, consistent with the results of the systematic review, represent CMC parental needs and experiences during the H2H process in the Netherlands: (1) autonomy, (2) division of tasks and roles, (3) family emotions, (4) impact on family life, (5) communication, (6) coordination of care, (7) support system and (8) adaptation. Conclusions: 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.