Understanding Caregiver Burden from Multiple Perspectives: Dyadic Agreement between Caregiver and Care Recipient

OBJECTIVES: Caregiver burden (CB) is typically self-assessed, but an emerging concept is assessment of CB by the recipients of care, i.e. the patient. Two perspectives can potentially be obtained to inform decision making: patient self-perceived burden to caregiver, or as a proxy intended to substitute for caregiver self-assessment. Our specific objectives were: 1) to assess the level of agreement between care recipients’ and caregivers’ view on CB, across financial, physical, emotional, and social domains; 2) explore two care recipient perspectives: their self-perceived burden (CR-SPB), and their interpretation of the caregiver’s view (Proxy-CB).

METHODS: Data were collected from 504 caregiver-care recipient dyads in the U.S. using an online Qualtrics panel. The survey assessed CB using CarerQol and 5 newly developed items for care recipient perceived burden, i.e. physical, emotional, social, financial, global. The level of agreement between responses was quantified using weighted kappa (κ) coefficients for items and intraclass correlation coefficients (ICC) for index/summary scores. Agreement was interpreted as: chance (0); slight (0.10-0.20); fair (0.21-0.40); moderate (0.41-0.60); substantial (0.61-0.80); near-perfect (0.81-0.99); perfect (1.00).

RESULTS: The average age of caregivers was 49.2 years (SD=15.4), and 62.7 (SD=18.9) years for care recipients. Caregivers were most commonly spouses/partners (34.5%), children (29.8%), friend/family friends (11.9%) and 68.3% lived together. The κ estimates showed moderate to substantial agreement across CB domains, ranging from 0.48 for emotional to 0.66 for financial in Proxy-CB perspective. The CarerQol-7D Index showed moderate agreement (ICC=0.58), while there was substantial agreement for the summary score of CB items (ICC=0.76). Care recipients generally overestimated burden in the Proxy-CB perspective, while they underestimated it in the CR-SPB perspective.

CONCLUSIONS: Results demonstrate there is a difference between perspectives. Strong agreement suggests that care recipients can potentially substitute for caregivers depending on the dimension. Patient/care recipient self-perceived burden agrees less with caregivers and may provide complementary information.