Experiences of Parents of Children With Medical Complexity in the Pediatric Intensive Care Unit: A Scoping Review

Abstract

Background Medical advances and decreased mortality rates in the pediatric intensive care unit have increased the number of children surviving illnesses they may not have survived previously. The term child with medical complexity is poorly defined. Objectives The purposes of this scoping review were to examine the experiences of parents of children with medical complexity in the pediatric intensive care unit and describe strategies to help support these parents. Results Eight studies were eligible for inclusion. All were published from 2009 through 2021. One study was a quantitative observational study, 2 were mixed-methods studies, and 5 had a qualitative design. Parents experienced significant stress and depression. Sources of stress were parenting a child with complex chronic illness in the pediatric intensive care unit, uncertainty, communication between family members and clinicians, and lack of subspecialty communication. Strategies to assist parents included respecting parents’ expertise and providing consistent and clear communication with family members and among subspecialty clinicians. Conclusion This review is the first to examine the experiences of parents of children with medical complexity in the pediatric intensive care unit. The study was limited by lack of available research and lack of consensus for the definition of child with medical complexity. However, this review describes strategies that nurses may find useful when caring for parents of children with medical complexity.