The Psychosocial and Financial Ramifications of Thalassemia on Parents of Thalassemic Children Presented at Tertiary Care Hospitals

摘要

Thalassemia major is a disease that requires frequent admission of patients to medical facilities along with unremitting medicinal and blood transfusion aids. The families of such patients suffer in different aspects of their lives. The severity of the challenges they are subject to has been examined in this research with reference to Karachi and Hyderabad. Chief focus is rendered to the assessment of psychological, social, and economical implications. Objective: The aim of this study is to assess the social, financial and psychological impact of thalassemia on parents of children suffering from thalassemia. Study Design: Cross-sectional study. Place and Duration of Study: The study was conducted at PNS Shifa Hospital Karachi, Jinnah Post Graduate Medical Institute Karachi, and Civil Hospital Hyderabad. Methodology: A cross-sectional study which was aimed at establishing the social, financial and psychological impact of thalassemia on families of affected children was conducted at PNS Shifa Hospital, Jinnah Post Graduate Medical Institute Karachi, and Civil Hospital Hyderabad. The data was collected using a structured questionnaire as tool for data collection. The questionnaires were filled by interviewing the parents of registered thalassemia major patients by the researchers. Data was analyzed and interpreted using the SPSS 25.0 version. Results: The total number of participants which were meeting the inclusion criteria was 237. Study population with high income (above PK rupees 35,000) is demonstrated to be less severely affected than the low earning study group. 17% of the parents in the study admitted to having negative impact of their child’s illness on their relationship while 40% of study participants reveal their child is ignored/marginalized by relatives. About 80% of participants acknowledged feeling sad and depressed sometimes but only 25% of them take antidepressant medication.