Family Experience, Public Perception and Awareness toward Thalassemia in Rawalpindi City, Pakistan

https://doi.org/10.5281/zenodo.17516502

Abstract

Thalassemia is a hereditary blood disorder that places a heavy emotional, social, and financial burden on families worldwide, including Pakistan. This study explores public perception regarding thalassemia in Rawalpindi, focusing on families of affected children. A purposive sample of 100 respondents was selected from the Pakistan Thalassemia Welfare Society and Holy Family Hospital. Data were collected through face-to-face interviews using structured questionnaires and analyzed using SPSS for percentage distribution.

Results show that most respondents were female (73%) and aged between 31–40 years (55%). While 80% knew about thalassemia and 82% recognized it as a blood disorder, 84% believed cousin marriages are a major cause. Families faced numerous challenges, including difficulties in arranging blood (65%), high treatment costs (67%), and travel expenses to healthcare centers (60%). Many respondents reported that thalassemia affected their child’s education (69%) and daily family routine (36%). Social participation was also impacted, with 72% noting that thalassemia children are treated differently in society.

The study highlights the need for increased awareness through health education, improved access to medical facilities, blood donation campaigns, and family involvement in care. Premarital screening programs and dedicated thalassemia support services are recommended to reduce the disease burden. The findings underscore that thalassemia is not only a medical concern but a socio-economic challenge requiring coordinated support for families and patients.

Keywords: Thalassemia, Public perception, Family impact, Socio-economic burden, Rawalpindi