Application of qualitative methods to determine parents' and providers' perceptions and attitudes of patient-centered decision-making in the pediatric intensive care unit

Introduction The concept of patient-centered decision-making focuses on patient participation in clinical decision-making, taking into account the patients' perspective, and tailoring medical care to the patients' needs and preferences. However, the concept of patient-centered decision-making becomes more complicated when applied to the pediatric intensive care unit (PICU). In the PICU, it is a parent or other surrogate decision maker (SDM) who is making decisions for the pediatric patient. In addition, the intensity and time sensitivity of critical care decisions creates an environment in which physicians may play more directive roles. Due to the acuity of patients' conditions, critical care medicine is driven by team and multi-disciplinary approaches to care. The purpose of this study was to examine parents'/SDMs' and providers' perceptions and attitudes toward decision-making in the PICU. Methods After Institutional Review Board approval, a sample of parents/SDMs with children currently in the pediatric intensive care unit were recruited from two pediatric hospitals in Los Angeles County to participate in the study. A total of ten families (five from each site) participated in the study. Observations of families took place for two consecutive days for three hours each day. Once the families were transferred out of the PICU, separate interviews were conducted with the parent/SDM and a provider who interacted with the family. All observations and interviews were conducted between April and September, 2011. Observations of the families were recorded and interviews were also transcribed. Observations and parent/SDM and provider interviews were triangulated examining the following themes: provider-family communication, provider-to-provider communication, parent/SDM knowledge, and decision-making. Results The analysis produced the following themes: parents/SDMs felt that providers communicated well with them by keeping them updated and involved in discussions about their child's condition; parents/SDMs expressed frustration at what they perceived to be a lack of provider-to-provider communication; parents/SDMs felt that it was their responsibility to learn and collect information about their child's condition; both parents and providers preferred a shared decision-making approach. Conclusion Patient-centered decision-making offers many opportunities and challenges in the PICU setting. Although certain features of this approach appear already to be espoused in the PICU, other components, particularly specialist-to-specialist communication and consistent communication with families, remain a challenge.