title: Feasibility of preconception screening for thalassaemia in Indonesia: exploring the opinion of Javanese mothers.
abstract: BACKGROUND
  Thalassaemia has become a major public health issue in Indonesia. It has been estimated that up to 10% of the population carries a gene associated with beta-thalassaemia. Currently, there is no formal recommendation for thalassaemia screening. This study aimed to explore awareness of thalassaemia, and to explore attitudes regarding carrier testing among Javanese mothers.
  
  
  METHODS
  A quantitative questionnaire, designed using constructs of the Theory of Planned Behaviour, was applied cross-sectionally.
  
  
  RESULTS
  Out of 191 mothers who were invited, 180 agreed to participate (RR = 94%), of whom 74 had a child affected with thalassaemia. Both attitudes towards receiving information about thalassaemia, and attitudes towards carrier testing were very positive. Awareness of thalassaemia was poor. Mothers, both those with and without an affected child, had barely heard of thalassaemia, nor of carrier testing. However, all mothers, including those with an affected child expressed high levels of interest in carrier testing. Respondents did not perceive that they had any control over carrier testing, and feared stigmatization and being discriminated against if their carrier status was identified. Attitudes towards carrier testing explained 23% of future reproductive intentions, in addition to perceived stigmatization, education level and 'mother's age' (R (2)=0.44; p=0.001).
  
  
  CONCLUSIONS
  Responding mothers expressed high levels of interest in receiving information on both thalassaemia and carrier testing. The less educated and the more deprived they were, the keener they were to receive this information. Overall, awareness of thalassaemia was low. Even mothers with affected children seemed unaware of the inheritance pattern and the recurrent risk of having an affected child in a subsequent pregnancy, showing the need for genetic counselling in Indonesia. It is therefore recommended not only to raise awareness about thalassaemia, but to improve the education of healthcare professionals as well.
authors.affiliation: Biomedical Postgraduate Program on Genetic Counseling, Faculty of Medicine, Diponegoro University, Semarang, Indonesia.
authors.forename: Costrie Ganes
authors.initials: CG
authors.lastname: Widayanti
authors.forename: Annastasia
authors.initials: A
authors.lastname: Ediati
authors.forename: Moedrik
authors.initials: M
authors.lastname: Tamam
authors.forename: Sultana M H
authors.initials: SM
authors.lastname: Faradz
authors.forename: Erik A
authors.initials: EA
authors.lastname: Sistermans
authors.forename: Anne Marie C
authors.initials: AM
authors.lastname: Plass
mesh_terms: D000328:Adult; D003430:Cross-Sectional Studies; D003657:Decision Making; D004522:Educational Status; D005260:Female; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006579:Heterozygote; D006801:Humans; D007214:Indonesia; D007389:Internal-External Control; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D010353:Patient Education as Topic; D011287:Prejudice; D043762:Reproductive Behavior; D057545:Social Stigma; D011795:Surveys and Questionnaires; D013789:Thalassemia / Q000235:genetics* / Q000523:psychology*; D055815:Young Adult