Undergoing fixed orthodontic therapy had a negative impact on the overall OHRQoL, during the first 3 months of treatment, which then improved to pre-treatment scores, whilst a significant increase was observed in self-esteem as a result of treatment.
Objective
Describe the roles and respective responsibilities of pediatric intensive care unit (PICU) health care professionals (HCPs) in end-of-life care decisions faced by PICU parents.
Design
Retrospective qualitative study
Setting
University based tertiary care children’s hospital
Participants
Eighteen parents of children who died in the PICU and 48 PICU HCPs (physicians, nurses, social workers, child-life specialists, chaplains, and case managers).
Interventions
In depth, semi-structured focus groups and one-on-one interviews designed to explore experiences in end-of-life care decision making.
Measurements and Main Results
We identified end-of-life care decisions that parents face based on descriptions by parents and HCPs. Participants described medical and non-medical decisions addressed toward the end of a child’s life. From the descriptions, we identified seven roles HCPs play in end-of-life care decisions. The family supporter addresses emotional, spiritual, environmental, relational and informational family needs in a nondirective way. The family advocate helps families articulate their views and needs to HCPs. The information giver provides parents with medical information, identifies decisions or describes available options, and clarifies parents’ understanding. The general care coordinator helps facilitate interactions among HCPs in the PICU, among HCPs from different subspecialty teams, and between HCPs and parents. The decision maker makes or directly influences the defined plan of action. The end-of-life care coordinator organizes and executes functions occurring directly before, during and after dying/death. The point person develops a unique trusting relationship with parents.
Conclusions
Our results describe a framework for HCPs’ roles in parental end-of-life care decision making in the PICU that includes directive, value-neutral and organizational roles. More research is needed to validate these roles. Actively ensuring attention to these roles during the decision-making process could improve parents’ experiences at the end of a child’s life.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.