ASSESS AWARENESS AND KNOWLEDGE AMONG PARENTS OF CHILDREN WITH BETA THALASSEMIA MAJOR IN KARACHI, PAKISTAN.

Abstract

Thalassemia is a genetic disorder characterized by impaired hemoglobin production and is the second most prevalent disorder worldwide.

Methodology: An analytical cross-sectional study was conducted amongst 250 participants from both the Fatima foundation and Kashif Iqbal Thalassemia Care Private centers from June 2024 to January 2025, and convenient sampling techniques was used in this study.

Results: The majority of the children were cared for by their mothers (61.6%), who had no formal education (58.0%), who reported consanguineous marriages (73.6%) after childbirth, mainly (84.8%) one child was affected by thalassemia. However, to assess the knowledge and awareness, over half of the respondents (52.8%) correctly identified thalassemia as a hereditary disease, (88.8%) of participants reported No knowledge about thalassemia prior to their child being, (43.2%) did not know about spreading through blood transfusion, while according to the awareness about complication (62.4%) did not aware, well in term of prevention (38.0%), and (52.4) were unaware about the screening during antenatal period. Besides, Chi X² was also used to identify the association between independent and dependent variables in which there is an association between the both parents need to have thalassemia minor for a child to be born with thalassemia major 56 (30.4%) with (p = 0.027), similarly related to the antenatal screening parents were not aware 79 (42.93%) as (p = 0.015). Pertaining, to the Parents Based on Number of thalassemia children; where statistically significant difference was observed in awareness of the types of thalassemia, with (22.4%) of respondents with one child and (27.5%) with more than two children indicating "Yes" (p = 0.039), likewise Awareness of antenatal screening for thalassemia children was also significantly higher in those with more than two children, with (53.8%) of those with one child and (34.1%) of those with more than two children indicating "Yes" (p = 0.009) respectively.

Conclusion: We conclude that parents of thalassemia-affected children do not know enough about the condition. There is no screening to rule out the etiology of the condition, and parents know very little about hereditary disorders.