Development and validation of a screener based on interRAI assessments to measure informal caregiver wellbeing in the community

BACKGROUND: Informal caregivers are invaluable partners of the health care system. However, their caring responsibilities often affect their psychological wellbeing and ability to continue in their role. It is of paramount importance to easily identify caregivers that would benefit from immediate assistance. METHODS: In this nonexperimental cohort study, a cross-sectional analysis was conducted among 362 informal caregivers (mean age 64.1 years, SD ± 13.1) caring for persons with high care needs (mean age 78.6 years, SD ± 15.0). Caregivers were interviewed using an interRAI-based self-reported survey with 82 items covering characteristics of caregivers including key aspects of wellbeing. A factor analysis identified items in the caregiver survey dealing with subjective wellbeing that were compared against other wellbeing measures. A screener, called Caregiver Wellbeing Index (CWBI), consisting of four items with response scores ranging from 0 to 2 was created. The CWBI was validated in a follow-up study in which 1020 screeners were completed by informal caregivers of home care clients. Clinical assessments of the care recipients (n = 262) and information on long-term care home (LTCH) admission (n = 176) were linked to the screener dataset. The association between the CWBI scores and caregiver and care recipient characteristics were assessed using logistic regression models and chi-square tests. The reliability of CWBI was also measured. RESULTS: The CWBI scores ranging from zero to eight were split in four ‘wellbeing’ levels (excellent, good, fair, poor). In the validation study, fair/poor psychological wellbeing was strongly associated with caregiver reports of inability to continue in their role; conflict with family; or feelings of distress, anger, or depression (P < 0.0001). Caregivers caring for a care recipient that presented changes in behavior, cognition, and mood were more likely to present fair/poor wellbeing (P < 0.0001). Additionally, caregivers with high CWBI scores (poor wellbeing) were also more likely to provide care for someone who was admitted to a LTCH (OR 3.52, CI 1.32–9.34) after controlling for care recipient and caregiver characteristics. The Cronbach alpha value 0.89 indicated high reliability. CONCLUSION: The CWBI is a valid screener that can easily identify caregivers that might benefit from further assessment and interventions.