An analysis of caregiver burden assessments using the International Classification of Functioning, Disability, and health (ICF): what aspects of burden are measured, and what is missing?

Abstract

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.

IMPLICATIONS FOR REHABILITATION

• 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.

Keywords:

• WHO-ICF
• caregiving
• chronic health
• informal caregiver
• caregiver burden

Author note

All authors declare that they have no conflicts of interest. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals or human subjects performed by any of the authors. Transparency statements: This study was not formally registered. Data from this study will be made available by emailing the corresponding author. There is not analytic code associated with this study. Materials used to conduct the study are publicly available.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.