Developing the family support tool: An interactive, web-based tool to help families navigate the complexities of surrogate decision making in ICUs.

Autor: Suen AO; University of Pittsburgh, School of Medicine, Department of Medicine, Division of General Internal Medicine, 1218 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15261, United States of America., Butler RA; University of Pittsburgh, School of Medicine, Department of Critical Care Medicine, Clinical Research, Investigation, and Systems Modeling of Acute Illness Center, Program on Ethics and Decision Making, 600 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15213, United States of America., Arnold R; University of Pittsburgh, School of Medicine, Department of Medicine, Division of General Internal Medicine, 1218 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15261, United States of America; University of Pittsburgh Medical Center Palliative and Supportive Institute, Iroquois Building, Suite 308, 3600 Forbes Avenue at Meyran Avenue, Pittsburgh, PA 15213, United States of America., Myers B; Carnegie Mellon University, School of Computer Science, Human Computer Interaction Institute, 5000 Forbes Avenue, Pittsburgh, PA 15213, United States of America., Witteman HO; Université Laval, Department of Family & Emergency Medicine, Bureau 4617, Pavillon Ferdinand-Vandry, 1050 Avenue de la Médecine, Quebec, QC G1V 0A6, Canada., Cox CE; Duke University, School of Medicine, Department of Medicine, Division of Pulmonary & Critical Care Medicine, 2301 Erwin Road, Durham, NC 27710, United States of America., Argenas A; University of Pittsburgh, School of Medicine, Department of Critical Care Medicine, Clinical Research, Investigation, and Systems Modeling of Acute Illness Center, Program on Ethics and Decision Making, 600 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15213, United States of America., Buddadhumaruk P; University of Pittsburgh, School of Medicine, Department of Critical Care Medicine, Clinical Research, Investigation, and Systems Modeling of Acute Illness Center, Program on Ethics and Decision Making, 600 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15213, United States of America., Bursic A; University of Pittsburgh, School of Medicine, Department of Critical Care Medicine, Clinical Research, Investigation, and Systems Modeling of Acute Illness Center, Program on Ethics and Decision Making, 600 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15213, United States of America., Ernecoff NC; University of Pittsburgh, School of Medicine, Department of Critical Care Medicine, Clinical Research, Investigation, and Systems Modeling of Acute Illness Center, Program on Ethics and Decision Making, 600 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15213, United States of America., Shields AM; University of Pittsburgh, School of Medicine, Department of Critical Care Medicine, Clinical Research, Investigation, and Systems Modeling of Acute Illness Center, Program on Ethics and Decision Making, 600 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15213, United States of America., Tran DK; University of Pittsburgh, School of Medicine, Department of Critical Care Medicine, Clinical Research, Investigation, and Systems Modeling of Acute Illness Center, Program on Ethics and Decision Making, 600 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15213, United States of America., White DB; University of Pittsburgh, School of Medicine, Department of Critical Care Medicine, Clinical Research, Investigation, and Systems Modeling of Acute Illness Center, Program on Ethics and Decision Making, 600 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15213, United States of America. Electronic address: douglas.white@pitt.edu.
Jazyk: angličtina
Zdroj: Journal of critical care [J Crit Care] 2020 Apr; Vol. 56, pp. 132-139. Date of Electronic Publication: 2019 Dec 06.
DOI: 10.1016/j.jcrc.2019.12.002
Abstrakt: Introduction: Although family members of incapacitated, critically ill patients often struggle in the role of surrogate decision maker, there are no low-cost, easily-scaled interventions to address this problem.
Aim of the Study: To develop and pilot-test the Family Support Tool, an interactive, web-based tool to help individuals navigate the complexities of surrogate decision making in ICUs.
Material and Methods: We used a mixed methods, user-centered process to create the Family Support Tool, including: 1) creation of a preliminary design by an expert panel; 2) engagement of a key stakeholder panel to iteratively refine the preliminary design; 3) user testing of a low-fidelity prototype of the tool by 6 former ICU surrogates; 4) creation of a web-based prototype; and 5) user testing of the web-based prototype with 14 surrogates and ICU physicians, including semi-structured interviews and quantitative measurement of usability, acceptability, and perceived effectiveness.
Results: The initial design contained a collection of videos and exercises designed to help individuals understand the surrogate's role and think through the patient's values and preferences. Based on family stakeholders' feedback about the emotional overwhelm they experience early in an ICU stay, we redesigned the tool to be viewed in sections, with the first section focused on decreasing surrogates' emotional distress, and later sections focused on helping surrogates prepare for family meetings. Surrogates actively making decisions in the ICU judged the final tool to be highly usable (mean summary score 83.5, correlating to 95th percentile when normalized to devices of its type), acceptable (mean 4.2 +/- 0.5 out of 5), and effective (mean 4.3 +/- 0.6 out of 5). All surrogates reported the tool helped them consider goals of care and all indicated they would recommend the tool to a friend.
Conclusions: We successfully developed a web-based tool to help individuals navigate the complexities of surrogate decision making in ICUs that has high potential for scalability. Surrogates judged the tool to be usable, acceptable, and effective. These data support proceeding to test the tool in a pilot randomized clinical trial.
(Copyright © 2019 Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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