Interdisciplinary collaboration in pediatric palliative care: a qualitative study on barriers and facilitators as perceived by parents and healthcare professionals

UNLABELLED: Pediatric palliative care (PPC) requires involvement of various healthcare professionals (HCPs) across home and hospital settings to address the complex needs of children and families. Interdisciplinary collaboration (IDC) among HCPs and parents is crucial for the coordination, continuation, and quality of PPC. Yet, IDC remains difficult to achieve in practice. We aimed to identify barriers and facilitators to IDC in PPC as experienced by expert parents and HCPs in order to strengthen PPC. An exploratory multiple-case study was conducted using semi-structured interviews. Cases consisted of (non-)bereaved parents of a child qualifying for PPC and their involved HCPs. Data was thematically analyzed using the QUAGOL method. Nine cases, representing nine children, were included, comprising interviews with 14 parents and 39 HCPs. Barriers and facilitators to IDC were context-dependent and spanned seven domains: network, interdependence, goals of care, roles and tasks, added value, responsibility, and urgency. IDC typically developed slowly after diagnosis due to barriers such as negative perceptions on collaborative partners or IDC. Collaboration intensified during crisis and the terminal phase due to facilitators such as awareness of being a network.

CONCLUSION: IDC in PPC cases is best understood as occurring in situational care networks (SCNs): temporary, child-specific constellations of parents and fluctuating non-standard and transmural collaborating HCPs. This conceptualization exposes vulnerabilities, but also opportunities of support and complementary HCP expertise in PPC collaboration. Early initiation of SCNs seems to better strengthen structural IDC than reactive reliance on parental coordination or crisis-driven senses in PPC.

WHAT IS KNOWN: • Interdisciplinary collaboration among healthcare professionals and parents is crucial for coordination, continuation, and quality of pediatric palliative care. • Parents and healthcare professionals report challenges regarding collaboration in pediatric palliative care.

WHAT IS NEW: • Besides facilitators and barriers in interpersonal interactions, individual attitudes and perceptions affect interdisciplinary collaboration in pediatric palliative care. • Conceptualizing collaboration as situational care networks of non-standard, transmural collaboration between healthcare professionals and parents may strengthen interdisciplinary collaboration.