Uncovering the realities of ß-Thalassemia major women through qualitative descriptive study- Policy matters

Abstract

Introduction: ß-Thalassemia is a genetic disorder that affects physical and emotional well-being and has a significant monetary impact on families and the healthcare system. Social support is believed to play a vital role in improving the quality of life for these patients, particularly in terms of mental wellbeing. This study aims to understand the universal psychosocial burdens faced by young women suffering from ß-thalassemia major and their perceptions and role in society.Methods: The study design was qualitative descriptive, using purposive sampling. In-depth interviews were conducted with six young women diagnosed with ß-thalassemia major, aged between 16 and 40 years, with varying levels of education. The data was analyzed using NVIVO-12, through coding, categorization, theme development, and mind mapping.Findings: This study aimed to understand the psychosocial facilitators and barriers to the wellbeing of female ß-thalassemia patients. Through inductive content analysis. Positive Factors which enhance quality of lives were education, family support, quality of life, and contributions to society however negative influencer factors were depression social segregation/isolation, lack of insurance services, difficulties in school, employment, and social relationships.Conclusion: This study highlights the psychosocial facilitators and barriers to the wellbeing of young female ß-thalassemia patients in Pakistan. It highlights the need for further research to understand their needs and the necessary support from society.