Kuharic Maja, Mulhern Brendan, Sharp Lisa K, Turpin Robin S, Pickard A Simon
Department of Pharmacy Systems, Outcomes, and Policy, College of Pharmacy, University of Illinois Chicago, Chicago, Illinois, USA.
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Gerontologist. 2025 Mar 25;65(4). doi: 10.1093/geront/gnae143.
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.
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.
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.
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.
受照护者自我感知负担（CR-SPB）对照护者而言是照护者与受照护者关系中一个重要但被忽视的方面。本研究旨在：（a）开发并验证CARE-2B（受照护者的两种负担）量表，评估CR-SPB及其对照护者负担的代理评估（Proxy-CB）；（b）检验CR-SPB和Proxy-CB是否与照护者自身对负担的评估以及其他健康和社会照护结构不同。
2022年8月至2023年2月期间，通过在线小组从美国504对照护者-受照护者二元组中收集数据。受照护者完成CARE-2B量表，该量表包括两个子量表：CR-SPB和Proxy-CB。受照护者还完成了与健康和幸福相关的测量：SPB量表、EQ-5D-5L以及EQ健康与幸福（EQ-HWB）。照护者完成了与照护相关的生活质量（CarerQoL）和成人社会照护结果工具包（ASCOT-Carer）。心理测量分析包括探索性和验证性因素分析、项目反应理论（IRT）以及结构效度分析。
CR-SPB与SPB量表高度相关（r = 0.73），而Proxy-CB与照护者报告的负担相关性更强（r = 0.61）。在IRT分析中，CR-SPB和Proxy-CB的项目均表现出良好的区分度和信息覆盖率。探索性因素分析进一步支持了CR-SPB和Proxy-CB的独特性，CR-SPB项目加载在与照护者负担和健康结构不同的一个因素上，而Proxy-CB与照护者报告的负担一致。
CARE-2B量表从受照护者的角度创新性地评估了CR-SPB和Proxy-CB，为照护关系提供了新的见解。这种双视角测量对于加强针对慢性病或残疾个体及其照护者的照护策略具有启示意义。
