Developing the family support tool: An interactive, web-based tool to help families navigate the complexities of surrogate decision making in ICUs.
Communication
Critical illness
Decision making
Human computer interaction
Intensive care units
Intervention
Professional-family relations
Program development
Surrogate decision maker
User-centered design methods
Journal
Journal of critical care
ISSN: 1557-8615
Titre abrégé: J Crit Care
Pays: United States
ID NLM: 8610642
Informations de publication
Date de publication:
04 2020
04 2020
Historique:
received:
13
09
2019
revised:
24
11
2019
accepted:
05
12
2019
pubmed:
4
1
2020
medline:
2
3
2021
entrez:
4
1
2020
Statut:
ppublish
Résumé
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. 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. 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. 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. 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.
Identifiants
pubmed: 31896447
pii: S0883-9441(19)31410-8
doi: 10.1016/j.jcrc.2019.12.002
pmc: PMC7646226
mid: NIHMS1548050
pii:
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
132-139Subventions
Organisme : NHLBI NIH HHS
ID : K24 HL148314
Pays : United States
Organisme : NIA NIH HHS
ID : R21 AG050252
Pays : United States
Informations de copyright
Copyright © 2019 Elsevier Inc. All rights reserved.
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