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. Although Bangladesh is in the world’s thalassaemia belt, the information on this disease is scarce. Additionally, the awareness of this life threatening, but potentially preventable disease is surprisingly poor. However, mass awareness is pivotal for the development of an effective preventive strategy. In this context, the understanding of parental perspectives is essential to grasp 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. Methods This 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 analyse data. Results Of 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. Conclusion This study suggests poor parental knowledge regarding thalassaemia including prenatal diagnosis and the challenges faced 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 other countries with similar sociocultural setting.

The scenario of knowledge, attitude and practice of the Bangladeshi population towards thalassemia prevention: A nationwide study

“…where 97% of respondents had never heard about the term, 'thalassemia' before the disease was diagnosed in their children [23]. The most worrisome finding in this study is that only 18.2% have adequate knowledge and the participants who declared to know about thalassemia, 20.4% believed that thalassemia is a transfusion transmitted disease.…”

Haemophilia in South Asia: A perspective from Bangladesh

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A Rational Approach to Drug Repositioning in β-thalassemia: Induction of Fetal Hemoglobin by Established Drugs

“…Despite the fact that β-thalassemia is considered a rare disease in several countries, the syndrome is one of the most important pathologies in developing countries 5 . This has been associated with a lack of genetic counseling and prenatal diagnosis, largely contributing in the maintenance of a very high frequency within the population 6 . In particular, β-thalassemia is prevalent in Mediterranean countries, the Middle East, Central Asia, India, Southern China, and the Far East as well as countries along the north coast of Africa and South America.…”