Abstract
BackgroundInformal 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.MethodsIn 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.ResultsThe 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.ConclusionThe CWBI is a valid screener that can easily identify caregivers that might benefit from further assessment and interventions.
Highlights
Informal caregivers, defined here as family members or friends caring for an adult with a chronic or disabling condition, are an integral part of the home and community care system in many countries
While the vast majority of screeners reported in caregiver research measure caregiver burden and other negative aspects of caregiving [31,32,33], this study develops and validates a measure of caregiver psychological wellbeing that is influenced by both negative and positive experiences
High scores were linked with negative aspects such as financial concerns, inability to continue in their role, physical pain, and loneliness while on the other hand, lower scores were associated with positive aspects of life such as caregivers feeling valued and respected by others, capable of managing stresses, satisfied with life, and hopeful about their future
Summary
Informal caregivers, defined here as family members or friends caring for an adult with a chronic or disabling condition, are an integral part of the home and community care system in many countries. The care provided by informal caregivers is paramount for supporting those in need to remain at home for as long as possible and to avoid institutional care [1]. The ability of informal caregivers to continue in their role is often threatened when they face increasing demands to provide care for individuals with complex health issues. The sustainability of the home care system relies on the capacity of informal caregivers to function effectively in their role as providers of support. Informal caregivers are invaluable partners of the health care system. Their caring responsibilities often affect their psychological wellbeing and ability to continue in their role. It is of paramount importance to identify caregivers that would benefit from immediate assistance
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