Mooney-Doyle, Kim

Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear.

Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness.

More than 500,000 children in the United States live with medical complexity. Their families assume responsibility for care and are directly affected by the associated financial costs. In this retrospective, nonexperimental study of children with medical complexity (CMC) and their families, greater than 50% of families experienced financial challenges and left employment to care for CMC. Poverty level was significantly related to financial challenges.

Objectives: Describe how parents prioritize parenting tasks and goals for their seriously ill and healthy children Illustrate how the process of trading-off one child's needs to meet those of another can contribute to parents' distress in serious pediatric illness.

Background: This investigation addressed family member perceptions of preparation for withdrawal of life-sustaining treatment in the intensive care unit. These families are at a high risk for psychosocial and physical sequelae. Methods: The quantitative results of this mixed methods study are reported. A control group received usual care and an educational booklet component of the intervention. The experimental group received the above plus exposure to comfort cart items and additional psychological support.