Due to power imbalances, families' values and preferences may not be integrated in decisions or families may be excluded from discussions about goals of care. We suggest that a systematic approach to identify parental preferences and needs for decisional roles and information may reduce variability in parental involvement.

This paper reports result from a systematic search and thematic analysis of qualitative literature to identify key issues related to family-centered care, behaviors, and communication skills that support the parental role and improve patient and family outcomes in the PICU. Five themes were identified: 1) sharing information; 2) hearing parental voices; 3) making decisions for or with parents; 4) negotiating roles; and 5) individualizing communication. These themes highlight several gaps between how parents want to be involved and perceive clinicians engage them in the care of their child. Parental preferences for involvement differ in the domains of information sharing, decision making, and power-sharing across a spectrum of parental roles from parents as care provider to care recipient. The PICU setting may place clinicians in a double bind trying to both engage families and protect them from distress. Asking families of critically ill children about their preferences for participation across these domains may improve clinician-family relationships.