Challenges and lived experiences of mothers caring for children with thalassemia: A study of Sargodha District

Abstract

Thalassemia is a genetic disease requiring lifelong treatment, including frequent blood transfusions, drug therapy and continuous medical supervision. Despite efforts to improve thalassemia medical management in Pakistan, limited research has examined the challenges and lived experiences of mothers who are primary caregivers of children with thalassemia, particularly in District Sargodha. This study explored the experiences and challenges of those mothers using a qualitative phenomenological design. Data was collected from 32 mothers selected through purposive sampling using semi-structured in-depth interviews. The research data was analyzed using narrative and thematic analysis techniques. Findings revealed considerable emotional, physical, and psychological stress, including anxiety, fear, sadness, uncertainty, and emotional exhaustion. Mothers also reported impacts on family life, social participation, finances, and personal health, along with social isolation, gender and cultural stressors, and challenges within healthcare settings. The study recommends a family-centered, holistic approach incorporating psychosocial counseling, social support, effective healthcare communication, and community-based services to improve mothers’ wellbeing and the quality of care provided to children with thalassemia.