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

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Some considerations about a report on ‘Public health in an era of genomic-based and personalized medicine’ from the Public Health Foundation, Cambridge

Journal of Community Genetics : Volume 2, Issue 1, March 2011

Journal of Community Genetics : Volume 1

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

Content Provider	Springer Nature Link
Author	Wong, Li Ping George, Elizabeth Tan, Jin Ai Mary Anne
Copyright Year	2011
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.
Starting Page	71
Ending Page	79
Page Count	9
File Format	PDF
ISSN	1868310X
Journal	Journal of Community Genetics
Volume Number	2
Issue Number	2
e-ISSN	18686001
Language	English
Publisher	Springer-Verlag
Publisher Date	2011-02-24
Publisher Place	Berlin, Heidelberg
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Thalassemia Education programs Multi-ethnic population Perspectives Attitudes Needs Gene Function Public Health/Gesundheitswesen Human Genetics Gene Therapy Epidemiology
Content Type	Text
Resource Type	Article
Subject	Public Health, Environmental and Occupational Health Epidemiology Genetics (clinical)

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

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