A psychometric evaluation of the Family Decision-Making Self-Efficacy Scale among surrogate decision-makers of the critically ill

AbstractObjectivesThe purpose of this study was to report the psychometric properties, in terms of validity and reliability, of the Unconscious Version of the Family Decision-Making Self-Efficacy Scale (FDMSE).MethodsA convenience sample of 215 surrogate decision-makers for critically ill patients undergoing mechanical ventilation was recruited from four intensive care units at a tertiary hospital. Cross-sectional data were collected from participants between days 3 and 7 of a decisionally impaired patient's exposure to acute mechanical ventilation. Participants completed a self-report demographic form and subjective measures of family decision-making self-efficacy, preparation for decision-making, and decisional fatigue. Exploratory factor analyses, correlation coefficients, and internal consistency reliability estimates were computed to evaluate the FDMSE's validity and reliability in surrogate decision-makers of critically ill patients.ResultsThe exploratory factor analyses revealed a two-factor, 11-item version of the FDMSE was the most parsimonious in this sample. Furthermore, modified 11-item FDMSE demonstrated discriminant validity with the measures of fatigue and preparation for decision-making and demonstrated acceptable internal consistency reliability estimates.Significance of resultsThis is the first known study to provide evidence for a two-factor structure for a modified, 11-item FDMSE. These dimensions represent treatment and palliation-related domains of family decision-making self-efficacy. The modified FDMSE is a valid and reliable instrument that can be used to measure family decision-making self-efficacy among surrogate decision-makers of the critically ill.

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Decisions to limit life-sustaining treatment for critically ill patients who lack both decision-making capacity and surrogate decision-makers*

Critical Care Medicine ◽

10.1097/01.ccm.0000227654.38708.c1 ◽

2006 ◽

Vol 34 (8) ◽

pp. 2053-2059 ◽

Cited By ~ 71

Author(s):

Douglas B. White ◽

J Randall Curtis ◽

Bernard Lo ◽

John M. Luce

Keyword(s):

Decision Making ◽

Critically Ill ◽

Critically Ill Patients ◽

Decision Makers ◽

Decision Making Capacity ◽

Life Sustaining Treatment ◽

Surrogate Decision Makers ◽

Surrogate Decision

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Surrogate decision makers’ attitudes towards research decision making for critically ill patients

Intensive Care Medicine ◽

10.1007/s00134-012-2625-x ◽

2012 ◽

Vol 38 (10) ◽

pp. 1616-1623 ◽

Cited By ~ 22

Author(s):

Kali A. Barrett ◽

Niall D. Ferguson ◽

Valerie Athaide ◽

Deborah J. Cook ◽

Jan O. Friedrich ◽

...

Keyword(s):

Decision Making ◽

Critically Ill ◽

Critically Ill Patients ◽

Decision Makers ◽

Surrogate Decision Makers ◽

Surrogate Decision ◽

Research Decision

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The Influence of Surrogate Decision Makers on Clinical Decision Making for Critically Ill Adults

Journal of Intensive Care Medicine ◽

10.1177/0885066613516597 ◽

2013 ◽

Vol 30 (5) ◽

pp. 278-285 ◽

Cited By ~ 5

Author(s):

Raj D. Shah ◽

Kenneth A. Rasinski ◽

G. Caleb Alexander

Keyword(s):

Decision Making ◽

Critically Ill ◽

Clinical Decision Making ◽

Clinical Decision ◽

Decision Makers ◽

Surrogate Decision Makers ◽

Surrogate Decision ◽

Critically Ill Adults ◽

Ill Adults

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Development and preliminary evaluation of EMPOWER for surrogate decision-makers of critically ill patients

Palliative & Supportive Care ◽

10.1017/s1478951521000626 ◽

2021 ◽

pp. 1-11

Author(s):

Wendy G. Lichtenthal ◽

Martin Viola ◽

Madeline Rogers ◽

Kailey E. Roberts ◽

Lindsay Lief ◽

...

Keyword(s):

Critically Ill ◽

Critically Ill Patients ◽

Experiential Avoidance ◽

Decision Makers ◽

Post Intervention ◽

Prolonged Grief ◽

Surrogate Decision Makers ◽

Surrogate Decision ◽

Peritraumatic Distress

Abstract Objective The objectives of this study were to develop and refine EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), a brief manualized cognitive-behavioral, acceptance-based intervention for surrogate decision-makers of critically ill patients and to evaluate its preliminary feasibility, acceptability, and promise in improving surrogates’ mental health and patient outcomes. Method Part 1 involved obtaining qualitative stakeholder feedback from 5 bereaved surrogates and 10 critical care and mental health clinicians. Stakeholders were provided with the manual and prompted for feedback on its content, format, and language. Feedback was organized and incorporated into the manual, which was then re-circulated until consensus. In Part 2, surrogates of critically ill patients admitted to an intensive care unit (ICU) reporting moderate anxiety or close attachment were enrolled in an open trial of EMPOWER. Surrogates completed six, 15–20 min modules, totaling 1.5–2 h. Surrogates were administered measures of peritraumatic distress, experiential avoidance, prolonged grief, distress tolerance, anxiety, and depression at pre-intervention, post-intervention, and at 1-month and 3-month follow-up assessments. Results Part 1 resulted in changes to the EMPOWER manual, including reducing jargon, improving navigability, making EMPOWER applicable for a range of illness scenarios, rearranging the modules, and adding further instructions and psychoeducation. Part 2 findings suggested that EMPOWER is feasible, with 100% of participants completing all modules. The acceptability of EMPOWER appeared strong, with high ratings of effectiveness and helpfulness (M = 8/10). Results showed immediate post-intervention improvements in anxiety (d = −0.41), peritraumatic distress (d = −0.24), and experiential avoidance (d = −0.23). At the 3-month follow-up assessments, surrogates exhibited improvements in prolonged grief symptoms (d = −0.94), depression (d = −0.23), anxiety (d = −0.29), and experiential avoidance (d = −0.30). Significance of results Preliminary data suggest that EMPOWER is feasible, acceptable, and associated with notable improvements in psychological symptoms among surrogates. Future research should examine EMPOWER with a larger sample in a randomized controlled trial.

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A Scenario-Based Investigation of Surrogate Decision Making for Older Adults

Innovation in Aging ◽

10.1093/geroni/igaa057.2469 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 703-703

Author(s):

Yuxin Zhao ◽

Benjamin Katz ◽

Pamela Teaster

Keyword(s):

Older Adults ◽

Decision Making ◽

Financial Management ◽

Self Efficacy ◽

Decision Makers ◽

Surrogate Decision Making ◽

Insurance Company ◽

Surrogate Decision ◽

Critically Ill Adults ◽

Amazon's Mechanical Turk

Abstract Surrogate decisions involve complex, challenging choices; surrogate decision-makers make treatment decisions for approximately 40% of hospitalized adults and 70% of older adults, and up to 95% of critically ill adults of any age. The purpose of our study was to understand how people make decisions for others and how surrogate decision making is linked to people’s cognition, self-efficacy, and demographics, especially differences in acute (e.g., health and medical care, financial management, and end of life) versus general scenarios (spending time with family, contacting an insurance company on behalf of a family member). Participants were recruited through Amazon’s Mechanical Turk. We collected data from 290 adult participants aged 18 years or older. On average, people reported a higher level of confidence in general versus acute scenario. The differences of confidence in scenario-based surrogate decision-making links to decision-makers’ cognition, self-efficacy, the experience of decision-making, the experience of caregiving, and demographic factors.

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Development and validation of the Family Decision-Making Self-Efficacy Scale

Palliative & Supportive Care ◽

10.1017/s1478951509990241 ◽

2009 ◽

Vol 7 (3) ◽

pp. 315-321 ◽

Cited By ~ 27

Author(s):

Marie T. Nolan ◽

Mark T. Hughes ◽

Joan Kub ◽

Peter B. Terry ◽

Alan Astrow ◽

...

Keyword(s):

Decision Making ◽

Self Efficacy ◽

Family Members ◽

Terminally Ill ◽

Loved One ◽

The Family ◽

Family Decision ◽

Patient Scenario ◽

Family Decision Making ◽

Test Retest Reliability

AbstractObjective:Several studies have reported high levels of distress in family members who have made health care decisions for loved ones at the end of life. A method is needed to assess the readiness of family members to take on this important role. Therefore, the purpose of this study was to develop and validate a scale to measure family member confidence in making decisions with (conscious patient scenario) and for (unconscious patient scenario) a terminally ill loved one.Methods:On the basis of a survey of family members of patients with amyotrophic lateral sclerosis (ALS) enriched by in-depth interviews guided by Self-Efficacy Theory, we developed six themes within family decision making self-efficacy. We then created items reflecting these themes that were refined by a panel of end-of-life research experts. With 30 family members of patients in an outpatient ALS and a pancreatic cancer clinic, we tested the tool for internal consistency using Cronbach's alpha and for consistency from one administration to another using the test–retest reliability assessment in a subset of 10 family members. Items with item to total scale score correlations of less than .40 were eliminated.Results:A 26-item scale with two 13-item scenarios resulted, measuring family self-efficacy in decision making for a conscious or unconscious patient with a Cronbach's alphas of .91 and .95, respectively. Test–retest reliability was r = .96, p = .002 in the conscious senario and r = .92, p = .009 in the unconscious scenario.Significance of results:The Family Decision-Making Self-Efficacy Scale is valid, reliable, and easily completed in the clinic setting. It may be used in research and clinical care to assess the confidence of family members in their ability to make decisions with or for a terminally ill loved one.

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Correlates of Cognitive Load in Surrogate Decision Makers of the Critically III

Western Journal of Nursing Research ◽

10.1177/0193945918807898 ◽

2018 ◽

Vol 41 (5) ◽

pp. 650-666 ◽

Cited By ~ 1

Author(s):

Grant A. Pignatiello ◽

Ronald L. Hickman

Keyword(s):

Emotion Regulation ◽

Cognitive Load ◽

Critically Ill ◽

Decision Aids ◽

Cross Sectional Study ◽

Decision Makers ◽

Expressive Suppression ◽

Cross Sectional ◽

Surrogate Decision Makers ◽

Surrogate Decision

Surrogate decision makers (SDMs) of the critically ill experience intense emotions and transient states of decision fatigue. These factors may increase the cognitive load experienced by electronic decision aids. This cross-sectional study explored the associations of emotion regulation (expressive suppression and cognitive reappraisal) and decision fatigue with cognitive load (intrinsic and extraneous) among a sample of 97 SDMs of the critically ill. After completing subjective measures of emotion regulation and decision fatigue, participants were exposed to an electronic decision aid and completed a subjective measurement of cognitive load. Multiple regression analyses indicated that decision fatigue predicted intrinsic cognitive load and expressive suppression predicted extraneous cognitive load. Emotion regulation and decision fatigue represent modifiable determinants of cognitive load among SDMs exposed to electronic decision aids.

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Prognostication and Ethics

Neurocritical Care ◽

10.1093/med/9780199375349.003.0025 ◽

2018 ◽

pp. 265-275 ◽

Cited By ~ 1

Author(s):

David Y. Hwang ◽

Douglas B. White

Keyword(s):

Traumatic Brain Injury ◽

Decision Making ◽

Decision Makers ◽

Care Planning ◽

Shared Decision ◽

Inappropriate Treatment ◽

Surrogate Decision Makers ◽

Advance Care ◽

Key Topics ◽

Surrogate Decision

This chapter provides an overview of prognostication and key topics in ethics as they relate to the practice of neurocritical care. Challenges with prognostication are summarized. Outcome prognostication tools for ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, and traumatic brain injury are outlined along with a discussion of their limitations. Best practices for communicating prognosis are reviewed. Shared decision-making with surrogate decision-makers in intensive care units is discussed in detail, with attention to advance care planning documentation and resolution of situations in which clinicians may have conscientious objections to potentially inappropriate treatment.

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