Who will guard the guardians? Cross-sectional study on prevalence of psychiatric morbidity, quality of life, and coping skills in caregivers of children with thalassemia major

BACKGROUND: Patients of thalassemia major require frequent hospitalization. Caregivers are more affected than the patient themselves as they better appreciate the magnitude of illness and treatment, resulting in increased risks for psychiatric illness. AIMS AND OBJECTIVES: The purpose of the study was to assess the prevalence of psychiatric morbidity in the caregivers of patients with thalassemia major. The study also examined the quality of life of the caregivers, their coping strategies, and its association with sociodemographic variables. METHODOLOGY: A cross-sectional study with 100 caregivers, recruited by convenience sampling technique, attending the thalassemia daycare center, was carried out over 12 months in a tertiary care hospital. They were administered a semistructured proforma along with General Health Questionnaire 12 (GHQ 12), WHO-Quality of Life-BREF (WHO-QOL-BREF), and Coping Inventory for Stressful Situations 21 scale. The GHQ 12 was used for screening and those scoring three or more underwent a clinical psychiatric interview. Those who were diagnosed with psychopathology were ascribed diagnosis as per ICD-10. Descriptive analysis was done. Associations were studied using Fischer's exact test. Comparison of quality of life with blood transfusion variables was done using Mann–Whitney U test. RESULTS: The prevalence of psychiatric morbidity amongst the caregivers was found to be 35% with depressive episode (22%) being the most common. Psychiatric morbidity was found to have a significant association with both, the frequency (P = 0.037) and total number of blood transfusions (P = 0.012). Coping was found to have a strong association with psychiatric morbidity (P = 0.001) and employment (P = 0.009). CONCLUSIONS: Caregivers of children with thalassemia major face psychological burden like depression or anxiety, for which treatment is not sought. Improved psychological health of the caregivers will ensure better care of the child and guarantee better adherence to the treatment.