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Measuring Intensive Care Nurses’ Perspectives on Family-Centered End-of-Life Care: Evaluation of 3 Questionnaires

Corresponding author: Lois Downey, MA, Box 358852, University of Washington, Seattle WA 98195 (e-mail: ldowney{at}u.washington.edu).

• Background Attempts to improve end-of-life care increasingly focus on family-centered care, but few validated assessment tools exist.

• Objectives To evaluate 3 new short questionnaires measuring nurses’ perspectives on family-centered end-of-life care in the intensive care unit and to show the usefulness of the questionnaires.

• Methods Principal components analysis of data from 141 critical care nurses evaluating care given to families of 218 patients was used to develop domain scores for number of nursing activities with each family, number of barriers experienced, and nurses’ satisfaction that the family’s needs were met. Random effects models were used to test associations between critical care processes and outcome.

• Results Nursing activities fell into 2 domains: general and culture-related communication/support. Barriers consisted of 2 domains: patient/family barriers and system/team barriers. Meeting the needs of patients’ families represented a single dimension. In a path model based on domain scores, general activities had significant associations with both nurse communication and meeting families’ needs; patient/family barriers, with nurse communication; and nurse and physician communication, with meeting families’ needs. In a path model based on total activities and barriers scores, total activities and total barriers had significant associations with nurse communication ratings and meeting families’ needs. Patients’ and nurses’ characteristics were not significant independent predictors of meeting the needs of patients’ families.

• Conclusions The 3 questionnaires provide a consistent, valid picture of nurses’ perspectives on family-centered critical care and may be useful in evaluating family care processes and outcomes and in targeting areas for improvement.