Abstract
BACKGROUND: Caring for moyamoya disease (MMD) patients is a demanding, prolonged, and continuous responsibility, often resulting in a significant caregiver burden for primary family caregivers. Considering the enormous challenges faced by the primary caregiver in a family and the serious consequences of the caregiver burden, it becomes crucial to know current status and assess the factors associated with the caregiver burden. OBJECTIVE: This study aimed to assess caregiver burden among primary family caregivers of MMD patients and examine its association with patients' Activities of Daily Living (ADL), caregivers' socio-demographic characteristics, and illness uncertainty. METHOD: A cross-sectional survey using convenience sampling was conducted in China. Data collection conducted from January to July 2024 at two tertiary hospitals in Henan province, China. A socio-demographic characteristics questionnaire, the Chinese version of Barthel Index scale, the Chinese version of Zarit burden interview scale, and the Chinese versions of Mishel illness uncertainty scale for family member were used to perform this research. The collected data were analyzed using SPSS 24.0 statistical software. RESULT: A total of 287 primary caregiver of patients with MMD were recruited in this survey. Of the 287 primary family caregivers of patients with MMD, 44 (15.33%) experienced mild burden, 106 (36.93%) experienced moderate burden, and 137 (47.74%) experienced severe burden. Multiple linear regression analysis revealed that marriage status (β = 0.079, P = 0.027), average monthly income (β = -0.515, P<0.001), daily care hours(β = 0.138, P<0.001), BI (β = 0.243, P<0.001) and illness uncertainty (β = 0.255, P<0.001) are associated factors with caregiver burden. CONCLUSION: This study found that nearly half of the primary family caregivers of patients with MMD had severe levels of caregiver burden, which is influenced by several factors. These findings contribute to a better understanding of the challenges faced by caregivers of MMD patients and may inform future research, clinical assessments, and supportive resource planning.