A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs

Abstract

Hemoglobin disorders which include thalassemias are the most common heritable disorders. Effective treatment is available, and these disorders can be avoided as identification of carriers is achievable using simple hematological tests. An in-depth understanding of the awareness, attitudes, perceptions, and screening reservations towards thalassemia is necessary, as Malaysia has a multi-ethnic population with different religious beliefs. A total of 13 focus group discussions (70 participants) with members of the general lay public were conducted between November 2008 and January 2009. Lack of knowledge and understanding about thalassemia leads to general confusions over differences between thalassemia carriers and thalassemia major, inheritance patterns, and the physical and psychologically impact of the disorder in affected individuals and their families. Although most of the participants have not been tested for thalassemia, a large majority expressed willingness to be screened. Views on prenatal diagnosis and termination of fetuses with thalassemia major received mixed opinions from participants with different religions and practices. Perceived stigma and discrimination attached to being a carrier emerged as a vital topic in some group discussions where disparity in the answers exhibited differences in levels of participants' literacy and ethnic origins. The two most common needs identified from the discussion were information and screening facilities. Participants' interest in knowing the severity of the disease and assessing their risk of getting the disorder may imply the health belief model as a possible means of predicting thalassemia public screening services. Findings provide valuable insights for the development of more effective educational, screening, and prenatal diagnostic services in the multi-ethnic Asian society.

“He didn’t say that thalassaemia might come up” — β-thalassaemia carriers’ experiences and attitudes

“…It is also concerning that as a result of misunderstanding, many women from the current study believed they had been diagnosed with a medical condition, misattributed symptoms to this, and that some continued to worry about both their and their children's future health as a carrier. Similar misunderstanding was apparent amongst carriers detected in the antenatal screening program in England due to the terminology used (Locock and Kai 2008) and, in a study by Wong and colleagues, people in Malaysia described symptoms they associated with 'thalassaemia minor', such as pale skin and tiredness (Wong et al 2011). This suggests that the issue is not confined to the communication styles of Victorian healthcare practitioners, but reflects widespread practices in the education and care of those found to be carriers.…”

Increased knowledge of thalassemia promotes early carrier status examination among medical students

“…The study by showed that audio-visual aids and personal experience sharing have been suggested as an effective means for communication and education among young adults. (18) Therefore, efforts to promote screening are of great interest to young adults. Thalassemia can be prevented by prenatal diagnosis, but selective abortion is not widely accepted by the public.…”

Carrier screening in preconception consultation in primary care

“…Typically, preconceptional carrier screening is voluntary when it occurs in high schools and more often mandatory when applying for a marriage license (described as pre-marital screening) (Cousens et al 2010). These seem to be acceptable to the communities in which these approaches exist such as in Bahrain (Al Arrayed and Al Hajeri 2010) or in Malaysia where these might be implemented (Wong et al 2011a(Wong et al , 2011b. However, in the Netherlands where a screening program is not offered, there appeared to be a reluctance by GPs and midwives to facilitate the testing of at-risk ethnic groups, which could be a barrier to implementation (Weinreich et al 2009).…”