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Journal of Community Genetics

, Volume 7, Issue 3, pp 243–253 | Cite as

Carrier screening for beta-thalassemia in the Maldives: perceptions of parents of affected children who did not take part in screening and its consequences

  • Fazeela WaheedEmail author
  • Colleen Fisher
  • AwoNiyi Awofeso
  • David Stanley
Original Article

Abstract

The Republic of Maldives (Maldives) is an island nation in the Indian Ocean with a population of 344, 023. Studies show that Maldives has one of the world’s highest thalassemia carrier rates. It is estimated that 16–18 % of the Maldivians are β-thalassemia carriers, and approximately 28 new β-thal cases are recorded annually. Poor uptake of screening for the condition is one of the main reasons for this high number of new cases. The aim of this study was to explore the reasons for not testing for thalassemia in Maldives before or after marriage. Findings show that participants did not undergo carrier tests because of poor awareness and not fully knowing the devastating consequences of the condition. The outcomes of not testing were distressing for most participants. Religion played a vital role in all the decisions made by the participants before and after the birth of a β-thal child.

Keywords

Maldives Thalassemia Premarital testing Genetic screening 

Notes

Acknowledgments

We would like to thank all the participants who took part in this study and all the staff of Maldives Blood Services for all the help they provided during this study.

Compliance with ethical standards

This study was approved by the ethics committee of the University of Western Australia (Ref: RA/4/1/5626) in accordance with the requirements of the National Statement on Ethical Conduct in Human Research (National Statement) and the policies and procedures of The University of Western Australia. In Addition, the study was approved by the National Health Research Committee of Maldives on the seventh of February, 2013. All procedures of this study were carried out in accordance to the laws and regulations of Australia and Maldives. All participants provided written consent prior to study.

Conflict of interest

The authors declare that they have no conflict of interest.

References

  1. Ahmed S, Bekker H, Hewison J, Kinsey S (2002) Thalassaemia carrier testing in Pakistani adults: behaviour, knowledge and attitudes. Public Health Genomics 5:120–127. doi: 10.1159/000065167 Google Scholar
  2. Al Hamdan NA, Al Mazrou YY, Al Swaidi FM, Choudhry AJ (2007) Premarital screening for thalassemia and sickle cell disease in Saudi Arabia. Genet Med 9:372–377. doi: 10.1097/GIM.0b013e318065a9e8 CrossRefGoogle Scholar
  3. Al-Farsi OA, Al-Farsi YM, Gupta I, Ouhtit A, Al-Farsi KS, Al-Adawi S (2014) A study on knowledge, attitude, and practice towards premarital carrier screening among adults attending primary healthcare centers in a region in Oman. BMC Public Health 14:1–16. doi: 10.1186/1471-2458-14-380 CrossRefGoogle Scholar
  4. Angastiniotis M (2014) The Maldives: WHO Mission August 2014. Thalassaemia International Federation, NicosiaGoogle Scholar
  5. Birgens H, Ljung R (2007) The thalassaemia syndromes. Scand J Clin Lab Invest 67:11–26. doi: 10.1080/00365510601046417 CrossRefPubMedGoogle Scholar
  6. Bozkurt G (2007) Results from the North Cyprus thalassemia prevention program. Hemoglobin 31:257–264. doi: 10.1080/03630260701297204 CrossRefPubMedGoogle Scholar
  7. Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3:77–101. doi: 10.1191/1478088706qp063oa CrossRefGoogle Scholar
  8. Caelli K, Ray L, Mill J (2003) ‘Clear as mud’: toward greater clarity in generic qualitative research. Int J Qual Methods 2:1–13Google Scholar
  9. Canatan D, Ratip S, Kaptan S, Cosan R (2003) Psychosocial burden of beta-thalassaemia major in Antalya, south Turkey. Soc Sci Med 56:815–819. doi: 10.1016/S0277-9536(02)00080-1 CrossRefPubMedGoogle Scholar
  10. Champion LV, Skinner SC (2008) The health belief model. In: Glanz K, Rimer BK, Viswanath K (eds) Health behavior and health education: theory, research, and practice. Jossey-Base: A Wiley Inprint, San FranciscoGoogle Scholar
  11. Chiruka S, Darbyshire P (2011) Management of thalassaemia. Paediatr Child Health 21:353–356. doi: 10.1016/j.paed.2011.02.012 CrossRefGoogle Scholar
  12. Fahad M, Alswaidi ZA, Memish SJ, O’Brien NA, Al-Hamdan FM, Al-Enzy OAA, Al-Wadey AM (2012) At-risk marriages after compulsory premarital testing and counseling for β-thalassemia and sickle cell disease in Saudi Arabia, 2005–2006. J Genet Couns 21(2):243–255. doi: 10.1007/s10897-011-9395-4 CrossRefGoogle Scholar
  13. Firdous N (2005) Prevention of thalassaemia and haemoglobinopathies in remote and isolated communities—the Maldives experience. Ann Hum Biol 32:131–137. doi: 10.1080/03014460500074996 CrossRefPubMedGoogle Scholar
  14. Firdous N, Gibbons S, Modell B (2011) Falling prevelance of beta-thalassaemia and eradication of malaria in the Maldives. J Community Genet 2:173–189. doi: 10.1007/s12687-011-0054-0 CrossRefPubMedPubMedCentralGoogle Scholar
  15. Garewal G, Das R, Jaur J, Marwaha RK, Gupta I (2005) Establishment of prenatal diagnosis for ß-thalassaemia: a step towards its control in a developing country. Ann Hum Biol 32:138–144CrossRefPubMedGoogle Scholar
  16. Habibzadeh F, Yadollahie M, Roshanipoor M, Haghshenas M (2012) Reproductive behaviour of mothers of children with beta-thalassaemia major. East Mediterr Health J 18:246–249PubMedGoogle Scholar
  17. Karimi M, Jamalian N, Yarmohammadi H, Askarnejad A, Afrasiabi A, Hashemi A (2007) Premarital screening for β-thalassaemia in Southern Iran: options for improving the programme. J Med Screen 14:62–66. doi: 10.1258/096914107781261882 CrossRefPubMedGoogle Scholar
  18. Kvale S (2007) Doing interviews. SAGE Publications, Ltd, London. doi: 10.4135/9781849208963 CrossRefGoogle Scholar
  19. Memish ZA, Saeedi MY (2011) Six-year outcome of the national premarital screening and genetic counseling program for sickle cell disease and β-thalassemia in Saudi Arabia. Ann Saudi Med 31:229–235. doi: 10.4103/0256-4947.81527 CrossRefPubMedPubMedCentralGoogle Scholar
  20. Merriam SB (2009) Qualitative research: a guide to design and implementation. Wiley, San FranciscoGoogle Scholar
  21. Ministry of Health (2013) The Maldives health statistics 2013. Ministry of Health, MaldivesGoogle Scholar
  22. Ministry of Legal Reform Information and Arts (2008) Functional translation of the Constitution of the Republic of Maldives 2008. President’s office, MaldivesGoogle Scholar
  23. National Bureau of Statistics (2015) Maldives: population and housing Cencus 2014. Ministry of Finance & Treasory, MaldivesGoogle Scholar
  24. Peoples’ Majlis (2012) Thalassaemia prevention law. President’s Office, MaldivesGoogle Scholar
  25. Pijpe J, de Voogt A, van Oven M, Henneman P, van der Gaag KJ, Kayser M, de Knijff P (2013) Indian ocean crossroads: human genetic origin and population structure in the Maldives. Am J Phys Anthropol 151:58–67. doi: 10.1002/ajpa.22256 CrossRefPubMedPubMedCentralGoogle Scholar
  26. Rozario S (2009) Allah is the scientist of the scientists: modern medicine and religious healing among British Bangladeshis. Cult Relig 10:177–199. doi: 10.1080/14755610903077562 CrossRefGoogle Scholar
  27. Saxena A, Phadke S (2002) Feasibility of thalassaemia control by extended family screening in Indian context. J Health Popul Nutr 20:31PubMedGoogle Scholar
  28. Sharghi A, Karbakhsh M, Nabaei B, Meysamie A, Farrokhi A (2006) Depression in mothers of children with thalassemia or blood malignancies: a study from Iran. Clin Pract Epidemiol Ment Health 2:27CrossRefPubMedPubMedCentralGoogle Scholar
  29. Shaw A, Hurst J (2008) “What is this genetics, anyway?” understandings of genetics, illness causality and inheritance among British Pakistani users of genetic services. J Genet Couns 17:373–383. doi: 10.1007/s10897-008-9156-1 CrossRefPubMedGoogle Scholar
  30. Tarazi I, Al Najjar E, Lulu N, Sirdah M (2007) Obligatory premarital tests for β-thalassaemia in the Gaza strip: evaluation and recommendations. Int J Lab Hematol 29:111–118. doi: 10.1111/j.1751-553X.2006.00836.x CrossRefPubMedGoogle Scholar
  31. United Nations Children’s Fund (2014) The state of the world’s children report 2015 statistical tables. United Nations Children’s Fund (UNICEF), New YorkGoogle Scholar
  32. Verma IC, Saxena R, Kohli S (2011) Past, present & future scenario of thalassaemic care & control in India. Indian J Med Res 134:507–521PubMedPubMedCentralGoogle Scholar
  33. Webster’s New World Medical Dictionary (2008) Thalassemia major. Credo Reference, Boston http://ezproxy.library.uwa.edu.au. Accessed 15 Nov 2015
  34. Widayanti CG, Ediati A, Tamam M, Faradz SMH, Sistermans EA, Plass AMC (2011) Feasibility of preconception screening for thalassaemia in Indonesia: exploring the opinion of Javanese mothers. Ethn Health 16:483–499. doi: 10.1080/13557858.2011.564607 CrossRefPubMedGoogle Scholar
  35. World Health Organization (2003) WHO South East Asia advisory committee on health research: report to the regional director. World Health Organization: Regional Office for South-East Asia, New DelhiGoogle Scholar
  36. World Health Organization (2010) Social disparities in health in the Maldives: an assessment and implications. World Health Organization: Regional Office for South-East Asia, IndiaGoogle Scholar
  37. World Health Organization (2015) World health statistics 2015. World Health Organization, LuxembourgGoogle Scholar
  38. Zeinalian M, Nobari R, Moafi A, Salehi M, Hashemzadeh-Chaleshtori M (2013) Two decades of pre-marital screening for beta-thalassemia in central Iran. J Community Genet 4:517–522. doi: 10.1007/s12687-013-0142-4 CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2016

Authors and Affiliations

  • Fazeela Waheed
    • 1
    Email author
  • Colleen Fisher
    • 1
  • AwoNiyi Awofeso
    • 2
  • David Stanley
    • 3
  1. 1.School of Population HealthUniversity of Western AustraliaPerthAustralia
  2. 2.School of Health and Environmental StudiesHamdan Bin Mohammed Smart UniversityDubaiUnited Arab Emirates
  3. 3.School of Nursing, Midwifery and Indigenous HealthCharles Sturt UniversityBathurstAustralia

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