Delineating Care Recipient Burden Constructs: Development and Validation of the CARE-2B Scale for Care Recipient Self-Perceived Burden and Proxy Assessment of Caregiver Burden

Maja Kuharic; Brendan Mulhern; Lisa K Sharp; Robin S Turpin; A Simon Pickard

doi:10.1093/geront/gnae143

Delineating Care Recipient Burden Constructs: Development and Validation of the CARE-2B Scale for Care Recipient Self-Perceived Burden and Proxy Assessment of Caregiver Burden

Gerontologist. 2024 Oct 24:gnae143. doi: 10.1093/geront/gnae143. Online ahead of print.

Authors

Maja Kuharic^{1

2}, Brendan Mulhern³, Lisa K Sharp^{1

4}, Robin S Turpin⁵, A Simon Pickard¹

Affiliations

¹ Department of Pharmacy Systems, Outcomes and Policy, College of Pharmacy, University of Illinois Chicago, Chicago, IL, USA.
² Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
³ Centre for Health Economics Research and Evaluation, University of Technology Sydney, Sydney, NSW, Australia.
⁴ Department of Biobehavioral Nursing Science, College of Nursing, University of Illinois Chicago, Chicago, IL, USA.
⁵ Independent Researcher, Lake Zurich, IL, USA.

PMID: 39447028
DOI: 10.1093/geront/gnae143

Abstract

Background and objectives: Care Recipient Self-Perceived Burden (CR-SPB) to Caregivers is an important but overlooked aspect within the caregiver-care recipient relationship. This study aimed to 1) develop and validate the CARE-2B (Care Recipient's Two Burden) Scale, assessing both CR-SPB and their proxy assessment of caregiver burden (Proxy-CB); 2) examine whether the CR-SPB and Proxy-CB differ from caregiver burden's own assessment and other health and social care constructs.

Research design and methods: Data were collected from 504 caregiver-care recipient dyads in the US using an online panel between August 2022 and February 2023. Care recipients completed the CARE-2B Scale, which includes two subscales: their self-perceived burden (CR-SPB) and their proxy assessment of caregiver burden (Proxy-CB). Care recipients also completed measures related to health, well-being: SPB-scale, EQ-5D-5L, and EQ-HWB. Caregivers completed CarerQoL and ASCOT-Carer. Psychometric analysis included exploratory and confirmatory factor analysis, item response theory (IRT), and construct validity.

Results: CR-SPB correlated strongly with the SPB-Scale (r=0.73), while Proxy-CB correlated more strongly with caregiver-reported burden (r=0.61). Both CR-SPB and Proxy-CB items demonstrated good discrimination and information coverage in IRT analysis. EFA further supported the distinctiveness of CR-SPB and Proxy-CB, with CR-SPB items loading on a separate factor from caregiver burden and health constructs, while Proxy-CB aligned with caregiver-reported burden.

Discussion and implications: The CARE-2B Scale innovatively assesses both CR-SPB and Proxy-CB from the care recipient's perspective, providing new insights into the caregiving relationship. This dual-perspective measure has implications for enhancing care strategies for individuals with chronic conditions or disabilities and their caregivers.

Keywords: CARE-2B Scale; Care recipient self-perceived burden; Caregiver burden; Proxy caregiver burden; Psychometric validation.

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