Profile and Psychological Burden in Caregiver of Children with Thalassemia Dependent Transfusion

Abstract

Background and Objective: Thalassemia is one of the most prevalent hereditary diseases in West Java, Indonesia. Children withthalassemia need care from the first years of their life owing to the physical and psychological effects of their disorder. Thalassemia is aconcern not only for the children’s health but also for the quality of life of both the children and their caregivers. This study investigatedthe relationship between the burden of care giving and the psychological conditions. Materials and Methods: In this analyticalcross-sectional study, a total of 60 parents of children with thalassemia dependent transfusion (11 fathers and 49 mothers) aged19-73 years (M = 38.12, SD = 9.80) were included, of whom 83.33% of caregivers lived with their spouses. All participants completed2 different questionnaires to assess their knowledge about thalassemia and their psychopathological symptoms (SCL-90). All participantsconsented to undergo screening and voluntarily participated in the screening tests. Results: Caregivers had high knowledge ofthalassemia, but their education levels were rather low. The major finding of this study was that their psychopathological symptoms weresignificantly associated with their occupation (p = 0.039, OR = 0.309, 95% CI = 0.099-0.965). Those with no occupation showed a higherprevalence of psychopathological symptoms. Conclusion: Thalassemia affects not only the persons with the disorder but also theircaregivers in several aspects, including their psychosocial well-being. This study emphasises the role of a supportive group in thepsychological well-being of caregivers, which could be used to prevent the pathological effects of caregiver burden and enhance their psychological well-being through counselling.