THE BURDEN OF THE INFORMAL CAREGIVERS FOR ACUTE STROKE SURVIVORS AFTER ONE MONTH POST-DISCHARGE

ABSTRACT

Objective: The rising burden of stroke in Malaysia has prompted attention on the primary caregivers of stroke survivors. Caregiving burden following stroke is a significant health care concern, however, the assessment of caregiving burden is understudied in Malaysia. This study aims to measure the informal stroke caregivers' burden one month after the patients were discharged from the stroke care. Methods: Acute stroke survivors and their informal caregivers were recruited from three major hospitals in the northeast of Peninsula Malaysia. To minimize the risk of direct contact during the COVID-19 pandemic, the caregivers who fulfilled study criteria were interviewed by phone. Information obtained included caregiver's demographic, self-reported caregiver burden measured using two commonly used tools, namely the Malay version Zarit Burden Interview (ZBI) and The Malay version Caregiver Assessment of Function and Upset (CAFU). ZBI consists of 22 questions and CAFU has a 15-item multidimensional measure of dependence. We measured ZBI and CAFU scores twice, one at baseline (post-discharge) and another one month later. The scores were presented as mean and standard deviation (SD). Results: A total of 93 informal caregivers were recruited with 66% of them being female. Generally, the caregiving burden was reduced from discharge (baseline) to one-month post-discharge. The overall mean (SD) scores for ZBI reduced from 23.7 (SD=14.45) to 19.9 (SD=12.67). The overall mean (SD) for CAFU dependency scores reduced from 43.5 (SD=12.65) to 39.4 (SD=15.19), for CAFU upset scores reduced from 5.3 (SD=7.69) to 3.9 (SD=5.47). Between male and female caregiver, the mean ZBI reduced for 13.2% and 23.1% while the CAFU dependency score reduced from 41.7 to 39.4 and 46.4 to 39.4 respectively. Conclusion: The burden felt by the caregivers was initially high but reduced significantly even after 1- month. Any psychosocial support or intervention aimed to ease caregiver burden should be started early.