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
Author Information
Maja Kuharic: Department of Pharmacy Systems, Outcomes, and Policy, College of Pharmacy, University of Illinois Chicago, Chicago, Illinois, USA. ORCID
Brendan Mulhern: Centre for Health Economics Research and Evaluation, University of Technology Sydney, Sydney, New South Wales, Australia.
Lisa K Sharp: Department of Pharmacy Systems, Outcomes, and Policy, College of Pharmacy, University of Illinois Chicago, Chicago, Illinois, USA.
Robin S Turpin: Independent Researcher, Lake Zurich, Illinois, USA.
A Simon Pickard: Department of Pharmacy Systems, Outcomes, and Policy, College of Pharmacy, University of Illinois Chicago, Chicago, Illinois, USA.
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 (a) 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); and (b) 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 United States using an online panel between August 2022 and February 2023. Care recipients completed the CARE-2B Scale, which includes two subscales: CR-SPB and Proxy-CB. Care recipients also completed measures related to health and well-being: SPB-scale, EQ-5D-5L, and EQ Health and Well-Being (EQ-HWB). Caregivers completed Care-Related Quality of Life (CarerQoL) and Adult Social Care Outcomes Toolkit for Carers (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), whereas 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. Exploratory factor analysis 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, whereas 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.
