Grant: Operating Grant

When a child is seriously ill or dying, family relationships and exchanges with health care professionals (HCPs) - nurses, physicians, and social workers - clearly determine parents' perceptions of care and its outcomes. When relationships are not good or interactions do not go well, parents carry memories of unnecessary additional suffering. When relationships are good and interactions "human", parents carry memories that are healing. Much is written about relationships and interactions gone wrong but little is written about best practices for HCPs despite an emphasis in recent years on communication skills in their professional education. We lack understanding of what makes it possible for some, but not all, HCPs to employ best practices that include not only technical expertise but generous sharing of their full humanity. The purpose of this study is to analyze best practices of interactions between pediatric HCPs and the parents of children with complex, chronic, and life-threatening conditions (CCCs). Using a qualitative approach, a total of 60-80 parents in 3 settings (Pediatric Oncology, Neonatal Intensive Care, and a free-standing children's hospice) will be observed in interaction with HCPs during their child's hospitalization. Observations will be followed by conversations with HCPs and parents regarding their initial responses to interactions, and then later in-depth interviews about the intent, impact, and meaning of the interactions and the factors that influence them. Findings will delineate best practices, specific factors that facilitate best practices, how interactions change over a hospitalization or hospice stay, and how they compare across clinical settings and among HCPs. Key dimensions of best practices in HCP/parent interactions will be identified for future studies aimed at incorporating best practices into the care of children with CCCs and enhancing the well-being of parents facing one of life's greatest challenges.