Poor knowledge and attitude
We found that the level of thalassaemia awareness was surprisingly low, and only one-third of the respondents (33%,
n = 1578) had heard of thalassaemia. Being situated in the world’s thalassaemia belt with an estimated carrier of about 6–12%, this result is quite unexpected [
4] as compared to other thalassaemia-prevalent countries such as Malaysia (~ 87%), Italy (85%), Greece (95%), Bahrain (65%), Turkey (58%) and Saudi Arabia (48%) [
12,
22‐
26]. This indicates that a major public health concern has been overlooked in Bangladesh.
While a large number of participants did not know anything about thalassaemia, the overall knowledge (represented by knowledge scores) of the participants who declared to know about the disease, was not satisfactory. Nearly two-third (64.5%) of the respondents who had heard of thalassaemia were not aware of the fact that thalassaemia carriers are essentially as healthy as non-carriers. Similar lack of awareness towards thalassaemia carriers has been reported from Saudi Arabia (64%), India (~ 89%) and Malaysia (79.7%) [
12,
26,
27]. This widespread lack of knowledge might be a pointer towards other socio-cultural problems which make life more difficult not only for patients with thalassaemia but for thalassaemia carriers as well. This is particularly concerning because of the potential for those who think they know about thalassaemia to pass on incorrect information to others who don’t know about this disease. In South Asian cultures, particularly in Bengali society, blood, marriage, kinship, identity and parenthood are highly valued and therefore, genetic mutation or thalassaemia carrier status could be equivalent to corrupting blood (Rokter dosh) and thus might be subjected to stigmatization [
28]. In Bangladesh (and the South Asian region overall), societal perceptions about the value of the potential bride and groom play a vital role in approving a marriage. Hence, any negative attitude about thalassaemia patients or carriers might seriously affect their social and personal life as a result of stigmatization of individuals or even entire families.
With overall poor knowledge, a significant proportion of the respondents had a negative attitude towards thalassaemia as a disease. We found that approximately 40% of the students stayed neutral or did not want to be friends with thalassaemia patients while the same proportion (~ 39%) either declined or remained hesitant about helping thalassaemia patients by donating blood. The implication of this negative attitude is perhaps much larger than thalassaemia patients merely losing some friends. Arguably, if the educated community which is aware of thalassaemia cannot accept patients as their friends, it is likely that stigmatization of the patients would be more widespread in the rest of the community. This might indicate a serious issue of fear or stigma associated with thalassaemia patients and thalassaemia as a disease in general.
The worst consequence of this dangerous combination of lack of knowledge and misperception could make people fearful of being identified as a carrier. This was perhaps evident from the fact that 12% of respondents did not agree to get screened before marriage. With such reservations prevailing among the college-going educated community, it is possible that the effects of a negative attitude towards thalassaemia as a disease would also be extended to carriers. As such, any attempt to prevent thalassaemia might face a challenge from the community itself; potential responses could include- refusal to undergo screening tests, presenting obstacle to efforts encouraging screening, repurcussions against the idea of preventing marriage between two thalassaemia carreers, etc. The main reasons behind such negative reactions could include fear of stigmatization (e.g., the notion of having blood line tainted which could potentially lead to enitre family or sect getting socially isolated) and fear of violating divine plan.
Dissemination
The difficulty of disseminating health information at the community level has also been highlighted in the present study. Contrary to expectation, this study has revealed that thalassaemia-related information spread via mass media (newspaper, TV, Radio and internet) and social media (i.e., Facebook) were perhaps insufficient (only 6% respondents identified these as knowledge-source). Approximately 92 million people in Bangladesh have access to the internet [
29] and nearly one third (25–30 million) of them use social media, (particularly Facebook), which is very popular among students aged 18–24 [
30,
31]. Among other sources, medical doctors contributed little (~ 1.7%) to generating awareness about thalassaemia in Bangladesh. In countries with successful thalassaemia prevention program, physicians (family doctors, obstetricians, and genetic counsellors) have played a significant role in disseminating thalassaemia related information. For instance, nearly 70% of the target population of Sardinia were informed by physicians [
13]. Similarly, a significant proportion of the general population in Italy (15%) and Malaysia (9%) were familiar with thalassaemia through physicians [
23,
26]. However, the scenario in the study setting, and perhaps similarly for the rest of Bangladesh, is remarkably different. Such a low contribution of physicians for dissemination might be due to scarcity of registered physicians in the rural areas, weak patient-physician relationship, and short consultation time (approximately 1–3 min) given to each patient sometimes due to sheer high number of paitients to be attended by each physician [
32,
33]. Thus, the means for educating and engaging healthcare professionals (physicians, health co-workers) in raising thalassaemia-awareness in Bangladesh needs to be reviewed.
For awareness, sending short messages (SMS) to the mobile phone users is being practiced by the Government of Bangladesh (GoB) as there are over 157 million mobile phone subscribers. About one month before conducting our survey the GoB sent an SMS to all mobile phone users on the eve of the first government-sponsored thalassaemia initiative to raise thalassaemia awareness. Despite this effort which was likely to reach a large target population, our study has revealed that more than two-third (67.5%) of college students (the majority of them are expected to be phone users) had not heard about thalassaemia. Although the question (whether the students wereaware of the SMS) was not included in the questionnaire, more than two-third respondents remaining unaware of thalassaemia suggests that disseminating health-related information at the community level using this approach needs to be reviewed to enhance effectiveness.
In our study, the curriculum was found to be the most effective source (~ 62.6%) of information for students who heard about thalassaemia. Amongst the three disciplines, science students were only taught about thalassaemia in their curriculum in grade XI and XII. This education includes classroom discussion by their teachers and self-reading. Thus, the inclusion of thalassaemia-related education in the curriculum for arts and humanities and business studies students might be effective for thalassaemia awareness. Thalassaemia related education as a part of the school curriculum has contributed to successful prevention programs around the world including Sardinia, Italy, Iran [
13]. If the college students are targeted, their teachers could then serve as a source of information for the rest of the community. However, nearly one-fifth of the students (17.8%) from science discipline had not heard about thalassaemia, suggesting that inclusion of teaching about thalassaemia in the curriculum by itself might not be sufficient. In this regard, classroom-based discussion among friends could be of great potential as relatives/friends (~ 10%) have been reported to be a good source of thalassaemia-related knowledge.
The proportion of students studying science has declined from 42% in 1990 to 22% in 2015 [
34]. In rural areas of Bangladesh (where about 70% of the population live), the majority of the collegestudents are enrolled in arts and humanities or business studies. This was also observed in our study. Therefore, incorporation of basic thalassaemia related information in the curricula of all three disciplines is recommended.
Despite many challenges revealed by this study, almost all of the college-students (> 90%) who heard about thalassaemia were keen to enhance awareness and expected their colleges to take the initiative in education about thalassaemia. The higher score on attitude implies that the college students were really feeling empathy yet they were not familiar with basic facts about thalassaemia. This highlights a positive inclination which could be exploited for intervention.
Although the attitude towards thalassaemia or to patients is not directly dependent on the knowledge about it, our survey also found that the discipline studied was a significant determinant of perception; the attitude of the students from science background was significantly more positive compared to those studying arts and humanities or business studies. This reinforces the importance of appropriate education incorporated within the curriculum.
Although the levels of perception varied between students from urban and rural colleges, this variation was mostly due to the urban colleges having higher proportion of students from science background. This could be an indication of disparity among the private and public colleges. Since public colleges (esp. outside of the capital city, Dhaka) traditionally attract better quality students and teachers. As such the overall environment is perhaps more conducive for better health literacy.
A high proportion of participants (88%) responded that they would get screened for thalassaemia with a blood test before marriage. Previous studies in Canada and India showed that high-school students had a high level of interest for thalassaemia screening with a participation rate of approximately 80% after attending educative programmes [
19]. This positive attitude should be taken into consideration before adopting any national policy.
Thalassaemia is becoming a higher priority for health planning in Bangladesh. The Ministry of Health has drafted a management guideline for medical practitioners, and organized national and international workshops [
35]. The Minister of Health also announced that “Bangladesh would be thalassaemia free by 2028”. Government efforts to curb thalassaemia has emphasized so far on providing partial financial support, improving clinical management of patients, and raising public awareness. However, due to financial and logistic constraints, government initiatives often are inadequate. As a public interest litigation issue, a writ petition has been submitted to the High Court of Bangladesh to make premarital screening mandatory, which has attracted public attention [
36]. This study complements these initiatives and has identified critical knowledge gaps, societal misperceptions and effective means of disseminating thalassaemia related information targeting an important age group (college students). Our findings would contribute to developing a policy for effective thalassaemia awareness, screening and intervention strategies (e.g., disseminating knowledge, raising thalassaemia awareness, encourage screening, etc.) in developing countries like Bangladesh.