"Who Has the Relationship?": Caring for a Shared Population of Children with Medical Complexity

Many academic pediatric centers care for children with medical complexity (CMC) through established complex care and palliative care programs. There are little prior data investigating best practices for collaboration between these two subspecialties in caring for CMC. The aim of this study is to explore the distinct and overlapping roles and responsibilities of pediatric complex care and palliative care teams as identified by providers when caring for a shared population of CMC and their families. Qualitative analysis of semi-structured interviews. Pediatric complex care and palliative care providers (physicians and nurse practitioners) actively caring for CMC at academic medical centers in the Midwestern United States. Data obtained from semi-structured interviews were audio-recorded, transcribed, coded, and analyzed by two independent reviewers using thematic analysis. Interviews revealed that both programs operate within a spectrum of clinical roles, thematically organized as complex-leaning, palliative-leaning, or blended. Responses highlighted that clinical roles are more likely defined by relationships established between specific providers and families, instead of by clear boundaries between the two programs. Pediatric complex care and palliative care teams provide both distinct and overlapping roles in caring for CMC. This overlap can vary between institutions and individual provider-caregiver dyads. Further studies are needed to explore collaborative practices on shared patients and caregiver perceptions on the benefits and challenges of utilizing both teams concurrently. This qualitative study of providers of CMC highlights the overlapping roles and responsibilities between complex care and palliative care teams in caring for a shared population of patients and families.