Hostname: page-component-586b7cd67f-2plfb Total loading time: 0 Render date: 2024-11-22T09:38:44.387Z Has data issue: false hasContentIssue false
  • English
  • Français

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: [email protected]
Get access Rights & Permissions [Opens in a new window]

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

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Bandura, A. (1997). Self-efficacy: The Exercise of Control. New York: W.H. Freeman and Company.Google Scholar
Depp, C., Sorocco, K., Kasl-Godley, J., et al. (2005). Caregiver self-efficacy, ethnicity, and kinship differences in dementia caregivers. American Journal of Geriatric Psychiatry, 13, 787–794.CrossRefGoogle ScholarPubMed
Hsieh, H.F. & Shannon, S.E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288.CrossRefGoogle ScholarPubMed
Mularski, R.A., Dy, S.M., Shurarman, L.R., et al. (2007). A systematic review of measures of end-of-life care and its outcomes. Health Services Research, 42, 1848–1870.CrossRefGoogle ScholarPubMed
Nolan, M.T., Hughes, M., Narendra, D.P., et al. (2005). When patients lack capacity: The roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisions. Journal of Pain and Symptom Management, 30, 342–353.CrossRefGoogle ScholarPubMed
Nolan, M.T., Kub, J., Hughes, M.T., et al. (2008). Family health care decision making and self-efficacy with patients with ALS at the end of life. Palliative and Supportive Care, 6, 273–280.CrossRefGoogle ScholarPubMed
Steffen, A.M., McKibbin, C., Zeiss, A.M., et al. (2002). The revised scale for caregiving self-efficacy: Reliability and validity studies. Journal of Gerontology, 57B, 74–86.CrossRefGoogle Scholar
Sulmasy, D.P., Hughes, M.T., Thompson, R.E., et al. (2007). How would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal study. Journal of the American Geriatric Society, 55, 1981–1988.CrossRefGoogle ScholarPubMed
Sulmasy, D.P., Sood, J.R., Texeira, K., et al. (2006). Prospective trial of a new policy eliminating signed consent for Do Not Resuscitate orders. Journal of General Internal Medicine, 21, 1261–1268.CrossRefGoogle ScholarPubMed
Teno, J.M., Lynn, J., Wenger, N., et al. (1997). Advance directives for seriously ill hospitalized patients: Effectiveness with the patient self-determination act and the SUPPORT intervention. Journal of the American Geriatrics Society, 45, 500–507.CrossRefGoogle ScholarPubMed
Tilden, V.P., Tolle, S.W., Nelson, C.A., et al. (2001). Family decision-making to withdraw life-sustaining treatments from hospitalized patients. Nursing Research, 50, 105–115.CrossRefGoogle ScholarPubMed
Vig, E.K., Starks, H., Taylor, J.S., et al. (2007). Surviving surrogate decision-making: What helps and hampers the experience of making medical decisions for others. Journal of General Internal Medicine, 22, 1274–1279.CrossRefGoogle ScholarPubMed