Abstract
Purpose: To describe parents' views of family-centered care at a pediatric intensive care unit.Design and Methods: A qualitative descriptive study with a deductive and inductive approach was conducted based on the principles of family-centered care. Inclusion criteria were parents of children cared for at a pediatric intensive care unit for at least 48 h. Parents of children who died during the hospital stay were excluded. The sample consisted of spontaneous responses from 70 parents to five open questions in the EMpowerment of PArents in THe Intensive Care questionnaire, which was completed at discharge. The spontaneous responses were analyzed using thematic analysis.Results: The analysis of the parents' statement illuminated that partnership, the essence of family-centered care, appeared incomplete. Partnership was particularly evident regarding parents' experiences of being treated with empathy and respect. It also seemed prominent in situations where the professional team provided support to the child, parents, and family. Based on the parents' statements there was potential for development of the family-centered care approach in aspects such as decision-making concerning care and treatment, as well as improving person-centered communication on order to capture parents' experiences and needs in the highly technological pediatric intensive care unit environment.Conclusions: Although in general parents were satisfied with the care, areas for improvement were identified such as participation in decision-making about care and treatment as well as person-centered communication. The results can contribute to future quality improvement interventions focusing family centered care at pediatric intensive care units.
Highlights
Medical and technical development as well as improved nursing care have resulted in better outcomes and increased survival rates for children in need of pediatric intensive care
More parents and families are living through the pediatric intensive care experience
The study was conducted as part of a larger study to psychometrically evaluate the EMpowerment of PArents in THe Intensive Care (EMPATHIC-30) questionnaire by Latour et al [22] in a Swedish setting
Summary
Medical and technical development as well as improved nursing care have resulted in better outcomes and increased survival rates for children in need of pediatric intensive care. Parents’ Views of Family-Centered Care in more advanced medical care at a PICU Another reason can be our growing population, as the child (0–18 years) population in Sweden increased by about 10% between 2010 and 2019 [2]. The child’s changed appearance and behavior due to her/his condition and medical treatment might negatively affect the parents [5, 6], placing them at risk of developing both acute- and posttraumatic stress disorder. Symptoms such as anxiety, difficulties concentrating and sleep problems have been reported [6,7,8]
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