Abstract

This study explores the socio-economic challenges faced by families whose children have β-thalassemia and need frequent transfusions and medical attention, which puts a great deal of social, financial and emotional strain on the caregivers. Since the state does not pay for the disease's treatment as part of its social welfare program, the parents must bear the entire expense of the care. The present quantitative nature of study employed proportionate stratified random sampling of 410 respondents by using structured questionnaire. Data was gathered from two Thalassaemia Centers (one was public while the other was NGO funded) namely, The Thalassaemia Center of Shaheed Zulfiqar Ali Bhutto Medical University (SZABMU) Pakistan Institute of Medical Sciences (PIMS) Islamabad comprised 73.2% of respondents, while Jamila Sultana Foundation, Rawalpindi, Pakistan comprised 26.8% of the respondents. Study found that majority of the respondents precisely, 70% were young parents from rural settings with low socio-economic status, large families with little formal education. The socio-economic difficulties that such families face is immense since their children need frequent transfusions and medical attention. Given that the families must bear the entire cost of the disease's treatment study found that the patient's family's financial situation affects their ability to pay for specific expenses like food, transportation, consultations, and medication during the process despite having free treatments provided by Thalassaemic centers, the study revealed that the lives of families with β-thalassaemia patients were significantly impacted due to large family size with low incomes making things more difficult financially. Logistical burdens like traveling long distances for medical care, parental employment, and disruptions to family dynamics all contribute to the economic burden to the families.