Knowledge, Attitudes and Practices Regarding the Prevention of Thalassemia in Parents of Thalassemic Children in Swat

Introduction: Thalassemia is a set of inherited disorder caused by a partial or complete mutation in one or more chain of the globin genes. Beta Thalassemia is the most common genetic disorder throughout the world including in Pakistan. Objectives: To assess the knowledge, attitudes and practices of parents of the children suffering from Thalassemia with regards to disease prevention. It also determined the degree of social and religious opposition faced by these parents during implementation of preventive practices Methods: A descriptive cross-sectional survey was conducted in district Swat, KP, via three regional thalassemia centers. Total of 200 parents of Thalassemia were interviewed using a pre-designed pre-tested structured questionnaire. All statistical analyses were conducted using Statistical Package for Social Sciences (IBM SPSS 23.0) Results: Out of the total participants, male parents were (67.7%), while females were (32.3%). A total of responses were gathered, and analyzed. Most respondents had adequate knowledge positive attitude towards thalassemia. Age, education, gender, and family income were key factors that correlated with or predicted the youth’s KAP towards thalassemia. Older respondents and women were more likely to have good KAP. 77.5% of parents opted for prenatal diagnosis, and 77% opted for termination of the affected fetus. Among these individuals, 7.5% faced opposition from their family members when they went for diagnostic testing, and this opposition rose to 18.5% when they had to opt for termination. The local religious clerics opposed prenatal diagnosis in 3.5% of the cases and termination in 4% of the cases. Conclusions: When compared to previous studies, the knowledge, attitudes, and practices of our study population were better. Thus, population screening programs have a positive impact on the knowledge, attitudes, and practices of careers of thalassemia patients. However, social and religious opposition needs to be countered for further implementation of effective preventive practices.