Purpose: To determine if commonly used caregiver burden assessments, Zarit Burden Interview(ZBI), Caregiver Reaction Assessment Scale(CRA), Caregiver Burden Inventory(CBI), and Caregiver Strain Index(CSI), provide clinicians and researchers with a comprehensive understanding of the burden that informal caregivers face.
Materials and methods: Meaningful concepts, identified from these assessments, were linked to the most appropriate and precise International Classification of Functioning, Disability, and Health (ICF) code by experienced coders using a validated standardized ICF linking technique. Descriptive statistics were used to examine and compare the comprehensiveness of each assessment.
Results: A total of 120 meaningful concepts identified from 83 items, represented three of the four ICF domains: 1) Body functions (27%), 2) Activities and Participation (29%), and 3) Environmental factors (5%). Eleven percent of concepts were too vague to be coded, and 25% were clearly defined but not included in the ICF. Six of the 17 epidemiologic factors of caregiver burden were covered by the assessments combined.
Conclusions: Linking commonly used caregiver burden assessments to the ICF and comparing the results to the epidemiologic factors of caregiver burden suggests that the assessments may not be capturing many of the factors associated with caregiver burden. This, in turn, may be hindering the development and implementation of effective caregiver education and interventions.
Keywords: WHO-ICF; caregiver burden; caregiving; chronic health; informal caregiver.
A comparison between the ICF coding results and the ‘epidemiology of caregiver burden’ suggests that the most common informal caregiver burden assessments are not comprehensive.Informal caregivers play a key role in the rehabilitation process. Knowledge of what aspects of burden are and are not included in each of the caregiver burden assessments will strengthen clinical decision-making about caregiver support, education, and interventions.A mixed-methods approach to caregiver burden assessment may provide a more comprehensive understanding of the burden.