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