Improving the Care Experience for Children with Complex Chronic Conditions and their Families in the Pediatric Intensive Care Unit: Parent and Nurse Perceptions

Children with complex chronic conditions (CCC) comprise a substantial proportion of the patient population in the pediatric intensive care unit (PICU). The parents of these children have developed expertise in the management of their child's condition, and they are often intimately involved in daily care routines, many of which are both intricate and highly specialized. Developing therapeutic relationships with these parents can be challenging in the technical, chaotic PICU environment, but optimal nursing care is dependent upon the development of such relationships. It is necessary to better understand the key elements of these therapeutic relationships and the barriers that nurses face in their attempt to connect with these families. This qualitative, grounded theory study attempted to identify "best practices" in parent-nurse interactions for the parents of children with CCC hospitalized in the PICU and to understand contextual factors that impacted these interactions. Participants were the parents of children with CCC (n=7) and direct care PICU nurses (n=12) from a single academic PICU in the western United States. Data was gathered through observation, interviews, and review of texts, including hospital policies and materials for parents. Parents consistently identified a need to have continuity of care from a small group of nurses who valued their child as an individual. They also wanted to receive care from nurses who appreciated the expertise that parents possess and who viewed care as a mutual collaboration between parent and nurse. Nurse participants showed an understanding of parents' wishes but also identified barriers to providing the desired care, including environmental and system constraints, difficulties engaging with other members of the healthcare team, and the behaviors and expectations of parents and other family members. Nurses identified multiple components of their direct care role, some of which made collaboration with parents more challenging, and they expressed concern about the emotional aspects of their work. The discrepancy between the care that parents of children with CCC desire and the care that PICU nurses are willing and able to provide suggests that more work must be done to facilitate optimal patient and family-centered care for this patient population