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

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

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, perceptio...

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Main Authors:	Wong, L.P., George, E., Tan, J.A.M.A.
Format:	Article
Language:	English
Published:	Springer Verlag (Germany) 2011
Subjects:	R Medicine
Online Access:	http://eprints.um.edu.my/3704/1/A_Holistic_Approcah_to_Education_Programmes_in_Thalassemia_for_a_Multi-Ethnic_Population.pdf http://eprints.um.edu.my/3704/ http://www.springerlink.com/content/ku3840v27466768m/
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id	my.um.eprints.3704
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spelling	my.um.eprints.37042017-07-14T09:01:27Z http://eprints.um.edu.my/3704/ A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs Wong, L.P. George, E. Tan, J.A.M.A. R Medicine 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. Springer Verlag (Germany) 2011 Article PeerReviewed application/pdf en http://eprints.um.edu.my/3704/1/A_Holistic_Approcah_to_Education_Programmes_in_Thalassemia_for_a_Multi-Ethnic_Population.pdf Wong, L.P. and George, E. and Tan, J.A.M.A. (2011) A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs. Journal of Community Genetics, 2 (2). pp. 71-79. ISSN 1868-310X http://www.springerlink.com/content/ku3840v27466768m/ 10.1007/s12687-011-0039-z
institution	Universiti Malaya
building	UM Library
collection	Institutional Repository
continent	Asia
country	Malaysia
content_provider	Universiti Malaya
content_source	UM Research Repository
url_provider	http://eprints.um.edu.my/
language	English
topic	R Medicine
spellingShingle	R Medicine Wong, L.P. George, E. Tan, J.A.M.A. A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs
description	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.
format	Article
author	Wong, L.P. George, E. Tan, J.A.M.A.
author_facet	Wong, L.P. George, E. Tan, J.A.M.A.
author_sort	Wong, L.P.
title	A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs
title_short	A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs
title_full	A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs
title_fullStr	A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs
title_full_unstemmed	A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs
title_sort	holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs
publisher	Springer Verlag (Germany)
publishDate	2011
url	http://eprints.um.edu.my/3704/1/A_Holistic_Approcah_to_Education_Programmes_in_Thalassemia_for_a_Multi-Ethnic_Population.pdf http://eprints.um.edu.my/3704/ http://www.springerlink.com/content/ku3840v27466768m/
_version_	1643687180757893120
score	13.211869

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

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