Estimating the Burden Among Informal Caregivers of Stroke Survivors in East Coast Peninsular Malaysia: A Short-Term Longitudinal Study

Taking care of stroke survivors can be taxing, however, it was understudied in Malaysia. This study aims to describe the burden of informal stroke caregivers within three months after hospital discharge. A longitudinal study design was conducted. Acute stroke survivors and their informal caregivers were recruited prior to hospital discharge, and the caregivers were interviewed by phone. Self-reported caregiver burdens were measured with Zarit Caregiver Burden Interview – Malay version (MZBI) and Caregiver Assessment of Function and Upset – Malay version (Malay-CAFU). The MZBI and Malay-CAFU scores were collected four times within three months. A total of 85 stroke survivors and 155 informal caregivers were recruited, with 58.1% of the caregivers were female. The stroke survivors had two caregivers on average. The mean (SD) scores for the three scales show a reduction, from 27.42 (12.73) in the first week to 17.77 (11.20) in the third month for MZBI, from 1.14 (0.94) to 0.62 (0.64) for instrumental activities of daily livings (IADL) of Malay-CAFU upset scale and 1.36 (1.00) to 0.78 (0.65) for activities of daily living (ADL) of Malay-CAFU upset scale in the same period. Stroke survivors may have several caregivers, usually their spouses or children. Within a short period, the caregiver’s burden was reduced. Early psychosocial support to alleviate the caregiver burden may be necessary.