THE POWER OF THALASSEMIA: A JOURNEY THROUGH THE LIVE EXPERIENCES OF PATIENTS AND THEIR FAMILIES, SHOWCASING RESILIENCE AND HOPE

Abstract

Thalassemia is a genetic blood disorder characterized by impaired hemoglobin production. This study aims to provide an in-depth qualitative analysis of the experiences of thalassemia patients and their families in Pakistan, showcasing their resilience and hope amidst adversity. A qualitative research design is employed to investigate the lived experiences of patients and families. A purposive sampling technique was employed to select participants who were most knowledgeable and experienced with management. The qualitative research method employs an exploratory qualitative method to explore the psychosocial dynamics of the disease. The results of this study show that there are significant treatment access barriers for patients and parents that indicate the need for better medical support roles of support groups and nongovernmental organizations (NGOs). Moreover, the study reveals critical gaps in healthcare accessibility, particularly in rural areas, and stresses the role of NGOs in alleviating these challenges. Moving forward, nationwide premarital and prenatal screening programs should be implemented to control the prevalence of Thalassemia.