Delineating family needs in the transition from hospital to home for children with medical complexity: part 1, a meta-aggregation of qualitative studies.

BACKGROUND: Advances in diagnostic and therapeutic interventions for rare diseases result in greater survival rates, with on the flipside an expanding group of children with medical complexity (CMC). When CMC leave the protective hospital environment to be cared for at home, their parents face many challenges as they take on a new role, that of caregiver rather than care-recipient. However, an overview of needs and experiences of parents of CMC during transition from hospital-to-home (H2H) is lacking, which hampers the creation of a tailored H2H care pathway. Here we address this unmet medical need by performing a literature review to systematically identify, assess and synthesize all existing qualitative evidence on H2H transition needs of CMC parents. METHODS: An extensive search in Medline, PsychINFO and CINAHL (up to September 2022); selection was performed to include all qualitative studies describing parental needs and experiences during H2H transition of CMC. All papers were assessed by two independent investigators for methodological quality before data (study findings) were extracted and pooled. A meta-aggregation method categorized the study findings into categories and formulated overarching synthesized findings, which were assigned a level of confidence, following the ConQual approach. RESULTS: The search yielded 1880 papers of which 25 met eligible criteria. A total of 402 study findings were extracted from the included studies and subsequently aggregated into 50 categories and 9 synthesized findings: (1) parental empowerment: shifting from care recipient to caregiver (2) coordination of care (3) communication and information (4) training skills (5) preparation for discharge (6) access to resources and support system (7) emotional experiences: fatigue, fear, isolation and guilt (8) parent-professional relationship (9) changing perspective: finding new routines and practices. The overall ConQual Score was low for 7 synthesized findings and very low for 2 synthesized findings. CONCLUSIONS: 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.

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.