Knowledge, burden and coping strategies among caregivers of thalassemic children attending thalassemia day care centre of selected hospital, Jodhpur
Background: Thalassemia is a blood disorder characterized by the reduction or absence in the synthesis of the globin chains of hemoglobin. Nearly 10% of children suffering from Thalassemia are being registered as new cases every year in Rajasthan. The aim of the study was to assess knowledge, burden and coping strategies among caregivers of thalassemic children.Methods: Data were collected from 150 caregivers of thalassemic children selected by purposive sampling technique at Umaid hospital, Jodhpur, Rajasthan. Data collection tool included self-structured knowledge questionnaire, Burden scale and Structured Brief COPE scale.Results: Equal numbers 36% and 35.33% of caregivers were having poor and good level of knowledge respectively, knowledge levels of the subjects were found to have significant association with monthly family income (p value=0.000), education (p value=0.007) and place of living (p value=0.000). 74.3% of caregivers reported moderate level of burden. Burden levels of the subjects were found to have significant association with Monthly family income (p value=0.000), and place of living (p value=0.000). Adaptive coping strategies were more evident as compare to maladaptive strategies. Conclusions: Knowledge was significantly lacking regarding diet management, benefits of exercise, role of iron chelation therapy etc. Continuous care of children put caregivers under moderate level of burden. There is great need to plan, implement health awareness programme for these caregivers.