The parental perspective of thalassaemia in Bangladesh: lack of knowledge, regret, and barriers

Abstract Background Thalassaemia, a hereditary haemoglobin disorder, is major public health concern in some parts of the world. Although Bangladesh world’s thalassaemia belt, information on this disease scarce. Additionally, awareness life threatening, but potentially preventable surprisingly poor. However, mass pivotal for development an effective preventive strategy. In context, understanding parental perspectives essential to grasp magnitude problem. Therefore, study aimed investigate knowledge gaps and perceptions regarding thalassemia, barriers confronted by parents caring their thalassaemic children attitude prenatal screening diagnosis. Methods This cross-sectional was conducted between January 2018 December at dedicated thalassemia hospital located Dhaka. A structured questionnaire used face-to-face interviews with children. Descriptive statistics were analyse data. Results Of 365 respondents, nearly all respondents (97%) had not heard about term, ‘thalassemia’ before diagnosed children; (100%) unscreened carrier status prior marriage. Mean scores significantly higher income education. Most (~ 91%) guilty feeling undergoing premarital screening. Only around 36% them Approximately 25% participants would consider diagnosis future pregnancy, while 70% unsure only ~ 5% decline 9.3% mothers previous pregnancy. Nearly 80% faced difficulty obtaining blood donors regularly similar proportion 81%) did receive support from any organized clubs. More than 40% reported they felt socially stigmatized. Conclusion suggests poor including challenges These findings be paramount importance planning devising prevention intervention strategies as well other countries sociocultural setting.