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

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.