Title |
Carrier screening for beta-thalassemia in the Maldives: perceptions of parents of affected children who did not take part in screening and its consequences
|
---|---|
Published in |
Journal of Community Genetics, July 2016
|
DOI | 10.1007/s12687-016-0273-5 |
Pubmed ID | |
Authors |
Fazeela Waheed, Colleen Fisher, AwoNiyi Awofeso, David Stanley |
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. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
India | 1 | 50% |
Maldives | 1 | 50% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 1 | 50% |
Practitioners (doctors, other healthcare professionals) | 1 | 50% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Unknown | 35 | 100% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Bachelor | 11 | 31% |
Other | 3 | 9% |
Researcher | 3 | 9% |
Student > Ph. D. Student | 3 | 9% |
Student > Doctoral Student | 2 | 6% |
Other | 6 | 17% |
Unknown | 7 | 20% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 11 | 31% |
Nursing and Health Professions | 6 | 17% |
Biochemistry, Genetics and Molecular Biology | 4 | 11% |
Agricultural and Biological Sciences | 3 | 9% |
Social Sciences | 3 | 9% |
Other | 1 | 3% |
Unknown | 7 | 20% |