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

Published online by Cambridge University Press:  30 September 2009

Marie T. Nolan ,
Mark T. Hughes ,
Joan Kub ,
Peter B. Terry ,
Alan Astrow ,
Richard E. Thompson ,
Lora Clawson ,
Kenneth Texeira  and
Daniel P. Sulmasy
Marie T. Nolan*
Affiliation:
School of Nursing, Johns Hopkins University, Baltimore, Maryland Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland
Mark T. Hughes
Affiliation:
Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland School of Medicine, Johns Hopkins University, Baltimore, Maryland
Joan Kub
Affiliation:
School of Nursing, Johns Hopkins University, Baltimore, Maryland
Peter B. Terry
Affiliation:
Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland School of Medicine, Johns Hopkins University, Baltimore, Maryland
Alan Astrow
Affiliation:
Division of Medical Oncology and Hematology, Maimonides Medical Center, Brooklyn, New York
Richard E. Thompson
Affiliation:
Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland
Lora Clawson
Affiliation:
School of Medicine, Johns Hopkins University, Baltimore, Maryland
Kenneth Texeira
Affiliation:
St. Vincent Catholic Medical Centers, New York, New York
Daniel P. Sulmasy
Affiliation:
St. Vincent Catholic Medical Centers, New York, New York New York Medical College, New York, New York
*
Address correspondence and reprint requests to: Marie T. Nolan, School of Nursing, Johns Hopkins University, 525 North Wolfe Street, Baltimore, MD 21205. E-mail: mnolan@son.jhmi.edu
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Abstract

Objective:

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.

Keywords

Decision makingSelf-efficacyEnd of lifeFamilyScale
Type
Original Articles
Information
Palliative & Supportive Care , Volume 7 , Issue 3 , September 2009 , pp. 315 - 321
Copyright
Copyright © Cambridge University Press 2009

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