Development of a Family Engagement Measure for the Intensive Care Unit

Introduction: Family engagement is a goal of care delivery in the intensive care unit (ICU). However, currently, no validated instrument for the ICU is designed specifically to measure family engagement. Our objective was to develop a novel family engagement measure. Methods: The Family Engagement (FAME) tool was developed through an iterative process, with input from experts, family members, and end-users. The FAME questionnaire is composed of 12 items. Each item is scored using a 5-point Likert scale and transformed onto a 0-100-point range, with higher scores indicating greater engagement. We performed a single-site pilot study for family members of patients in a cardiovascular ICU. Results: The FAME tool had a high construct validity and required an average of 3.33 minutes to complete. A total of 32 family members completed the FAME questionnaire (mean age: 52.4 ± 14.2 years; 71.4% female; 47% adult child ; 31% spouse/partner). The overall mean FAME score was 84.0% ± 25.2%. Differences in engagement across various domains were identified. Conclusions: The FAME measure is a focused and pragmatic tool to measure the degree and type of family engagement in care of patients in the ICU. Further studies are needed to evaluate the FAME tool in a larger population.