Michael A Smith1, Marla L Clayman2, Joel Frader3,4, Melanie Arenson5, Natalie Haber-Barker6, Claire Ryan7, Linda Emanuel8,9, Kelly Michelson4,10. 1. 1 Department of Pediatrics, University of California San Francisco , San Francisco, California. 2. 2 Health and Social Development, American Institutes for Research , Washington, DC. 3. 3 Division of Academic General Pediatrics and Primary Care, Ann & Robert H. Lurie Children's Hospital of Chicago , Chicago, Illinois. 4. 4 Department of Pediatrics, Northwestern University Feinberg School of Medicine , Chicago, Illinois. 5. 5 Department of Psychology, University of Maryland , College Park, Maryland. 6. 6 Department of Sociology, Iron Workers Local 395 Apprenticeship School, Ivy Tech College , Lake Station, Indiana. 7. 7 Department of Orthopedics, University of Texas at Austin Dell Medical School , Austin, Texas. 8. 8 Department of General Internal Medicine and Geriatrics, Northwestern University Feinberg School of Medicine , Chicago, Illinois. 9. 9 Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine , Chicago, Illinois. 10. 10 Division of Pediatric Critical Care Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago , Chicago, Illinois.
Abstract
BACKGROUND: Little is known about how decision-making conversations occur during pediatric intensive care unit (PICU) family conferences (FCs). OBJECTIVE: Describe the decision-making process and implementation of shared decision making (SDM) during PICU FCs. DESIGN: Observational study. SETTING/ SUBJECTS: University-based tertiary care PICU, including 31 parents and 94 PICU healthcare professionals involved in FCs. MEASUREMENTS: We recorded, transcribed, and analyzed 14 PICU FCs involving decision-making discussions. We used a modified grounded theory and content analysis approach to explore the use of traditionally described stages of decision making (DM) (information exchange, deliberation, and determining a plan). We also identified the presence or absence of predefined SDM elements. RESULTS: DM involved the following modified stages: information exchange; information-oriented deliberation; plan-oriented deliberation; and determining a plan. Conversations progressed through stages in a nonlinear manner. For the main decision discussed, all conferences included a presentation of the clinical issues, treatment alternatives, and uncertainty. A minority of FCs included assessing the family's understanding (21%), assessing the family's need for input from others (28%), exploring the family's desired decision-making role (35%), and eliciting the family's opinion (42%). CONCLUSIONS: In the FCs studied, we found that DM is a nonlinear process. We also found that several SDM elements that could provide information about parents' perspectives and needs did not always occur, identifying areas for process improvement.
BACKGROUND: Little is known about how decision-making conversations occur during pediatric intensive care unit (PICU) family conferences (FCs). OBJECTIVE: Describe the decision-making process and implementation of shared decision making (SDM) during PICU FCs. DESIGN: Observational study. SETTING/ SUBJECTS: University-based tertiary care PICU, including 31 parents and 94 PICU healthcare professionals involved in FCs. MEASUREMENTS: We recorded, transcribed, and analyzed 14 PICU FCs involving decision-making discussions. We used a modified grounded theory and content analysis approach to explore the use of traditionally described stages of decision making (DM) (information exchange, deliberation, and determining a plan). We also identified the presence or absence of predefined SDM elements. RESULTS:DM involved the following modified stages: information exchange; information-oriented deliberation; plan-oriented deliberation; and determining a plan. Conversations progressed through stages in a nonlinear manner. For the main decision discussed, all conferences included a presentation of the clinical issues, treatment alternatives, and uncertainty. A minority of FCs included assessing the family's understanding (21%), assessing the family's need for input from others (28%), exploring the family's desired decision-making role (35%), and eliciting the family's opinion (42%). CONCLUSIONS: In the FCs studied, we found that DM is a nonlinear process. We also found that several SDM elements that could provide information about parents' perspectives and needs did not always occur, identifying areas for process improvement.
Entities:
Keywords:
communication; decision making; family conferences; pediatric intensive care; pediatrics
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