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

Lulu Eva Rakhmilla, Shelly Iskandar, Susi Susanah, Enny Rohmawaty and Sjarif Hidajat Effendi

Background and Objective: Thalassemia is one of the most prevalent hereditary diseases in West Java, Indonesia. Children with thalassemia need care from the first years of their life owing to the physical and psychological effects of their disorder. Thalassemia is a concern not only for the children’s health but also for the quality of life of both the children and their caregivers. This study investigated the relationship between the burden of care giving and the psychological conditions. Materials and Methods: In this analytical cross-sectional study, a total of 60 parents of children with thalassemia dependent transfusion (11 fathers and 49 mothers) aged 19-73 years (M = 38.12, SD = 9.80) were included, of whom 83.33% of caregivers lived with their spouses. All participants completed 2 different questionnaires to assess their knowledge about thalassemia and their psychopathological symptoms (SCL-90). All participants consented to undergo screening and voluntarily participated in the screening tests. Results: Caregivers had high knowledge of thalassemia, but their education levels were rather low. The major finding of this study was that their psychopathological symptoms were significantly associated with their occupation (p = 0.039, OR = 0.309, 95% CI = 0.099-0.965). Those with no occupation showed a higher prevalence of psychopathological symptoms. Conclusion: Thalassemia affects not only the persons with the disorder but also their caregivers in several aspects, including their psychosocial well-being. This study emphasises the role of a supportive group in the psychological well-being of caregivers, which could be used to prevent the pathological effects of caregiver burden and enhance their psychological well-being through counselling.

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