Quality of life among caregivers of thalassaemic children, attending at Thalassaemia control unit of a rural tertiary care hospital, in a sub-Himalayan district of West Bengal

Abstract

Thalassaemia is a disease of abnormal development of red blood cells which manifests as anaemia. This chronic disease may cause mental, social, financial burdens on the families, care givers and also on health care system.To assess the quality of life (QOL) of the caregivers of thalassaemic children and to identify the predictors of quality of their physical and mental health.Institution based descriptive cross-sectional study conducted in the Thalassaemia Control Unit (TCU) of North Bengal Medical College (NBMC) from December 2018 to April 2019. Total 136 caregivers of children (≤12 years) with thalassaemia were included by complete enumeration method. Physical and mental health of the caregivers were reported in Short Form-36 (SF-36) Health Survey. Collected data were entered into MS-Excel, analysed with the help of SPSS (Version 22).Mean age of caregivers was 34.3 (SD ± 1.4 years). Most of caregivers were female (89%) and had educational qualification up to Primary school (45.6%). Majority (70.6%) of the caregivers were the mothers of the children. Most of the study participants (60.3%) had favourable Physical health Component Summary (PCS) but 64.7% of the caregivers had unfavourable Mental health component Summary (MCS). Educational status was found to be the predictor for PCS but age and relationship with the child were the predictors for MCS.Counselling, psychotherapy, social support for family members or caregivers of the thalassaemic children and community involvement with their full participation should be emphasized to reduce stigma related to thalassaemia.