Elliott Mark Weiss1, Frances K Barg2, Noah Cook3, Emily Black4, Steven Joffe5. 1. Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA; Division of Neonatology, The Children's Hospital of Philadelphia, Philadelphia, PA. 2. Department of Family Medicine and Community Health, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA. 3. Division of Neonatology, Children's Hospital of Philadelphia Newborn Care at Pennsylvania Hospital, Philadelphia, PA. 4. Mixed Methods Research Lab, Department of Family Medicine and Community Health, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA. 5. Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA; Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, PA. Electronic address: joffes@upenn.edu.
Abstract
OBJECTIVE: To explore how characteristics of medical decisions influence parents' preferences for control over decisions for their seriously ill infants. STUDY DESIGN: In qualitative interviews, parents of infants in the neonatal intensive care unit (NICU) were asked to consider all medical decisions they could recall, and were prompted with decisions commonly encountered in the NICU. For each decision, parents were asked detailed questions about who made each decision, whom they would have preferred to make the decision, and why. Using standard qualitative methods, responses were coded and organized such that decision-level characteristics could be analyzed according to preferred decision-making role. RESULTS: Parents identified 2 factors that were associated with a preference to delegate decisions to the medical team (high degree of urgency, high level of required medical expertise) and 4 factors associated with a preference to retain parental control (high perceived risk, high personal experience with the decision, involvement of foreign bodily fluids, and similarity to decisions that they perceived as part of the normal parental role). CONCLUSIONS: Characteristics of decisions influence preferences for control over medical decisions among parents of patients in the NICU. These insights may guide improvements in physician-parent communication and consent.
OBJECTIVE: To explore how characteristics of medical decisions influence parents' preferences for control over decisions for their seriously ill infants. STUDY DESIGN: In qualitative interviews, parents of infants in the neonatal intensive care unit (NICU) were asked to consider all medical decisions they could recall, and were prompted with decisions commonly encountered in the NICU. For each decision, parents were asked detailed questions about who made each decision, whom they would have preferred to make the decision, and why. Using standard qualitative methods, responses were coded and organized such that decision-level characteristics could be analyzed according to preferred decision-making role. RESULTS: Parents identified 2 factors that were associated with a preference to delegate decisions to the medical team (high degree of urgency, high level of required medical expertise) and 4 factors associated with a preference to retain parental control (high perceived risk, high personal experience with the decision, involvement of foreign bodily fluids, and similarity to decisions that they perceived as part of the normal parental role). CONCLUSIONS: Characteristics of decisions influence preferences for control over medical decisions among parents of patients in the NICU. These insights may guide improvements in physician-parent communication and consent.
Authors: Elliott Mark Weiss; Aleksandra E Olszewski; Katherine F Guttmann; Brooke E Magnus; Sijia Li; Anita R Shah; Sandra E Juul; Yvonne W Wu; Kaashif A Ahmad; Ellen Bendel-Stenzel; Natalia A Isaza; Andrea L Lampland; Amit M Mathur; Rakesh Rao; David Riley; David G Russell; Zeynep N I Salih; Carrie B Torr; Joern-Hendrik Weitkamp; Uchenna E Anani; Taeun Chang; Juanita Dudley; John Flibotte; Erin M Havrilla; Charmaine M Kathen; Alexandra C O'Kane; Krystle Perez; Brenda J Stanley; Benjamin S Wilfond; Seema K Shah Journal: JAMA Netw Open Date: 2021-01-04
Authors: Shanara Abdin; Gemma Heath; Susan Neilson; James Byron-Daniel; Nic Hooper Journal: Child Care Health Dev Date: 2022-01-12 Impact factor: 2.943