‘Rakter dosh’—corrupting blood: The challenges of preventing thalassemia in Bengal, India

Chattopadhyay, Sreeparna

doi:10.1016/j.socscimed.2006.06.031

Cited by 55 publications

(55 citation statements)

References 26 publications

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“…17,18 Previous research has suggested that people are reluctant to disclose carrier status when arranging marriages. [19][20][21] This study's findings differ significantly; many of the responders wanted to know about carrier status before choosing a partner and recommended openness.…”

Section: Comparison With Existing Literaturementioning

confidence: 76%

“…Raising awareness of Islamic teaching on termination might also help. 20,24,27 Previous work has found the main reason parents of Pakistani origin had comparatively lower use of prenatal diagnosis 28 was not Muslim objection to termination but, rather, inequality in service delivery. Screening was not undertaken or timely choices and options were not provided.…”

Section: Comparison With Existing Literaturementioning

confidence: 99%

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Parents' experiences of universal screening for haemoglobin disorders: implications for practice in a new genetics era

Locock

Kai²

2008

Br J Gen Pract

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Section: Comparison With Existing Literaturementioning

confidence: 76%

Section: Comparison With Existing Literaturementioning

confidence: 99%

Parents' experiences of universal screening for haemoglobin disorders: implications for practice in a new genetics era

Locock

Kai²

2008

Br J Gen Pract

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“…In India, a thalassemia carrier is socially isolated with lower marital prospects (Saxena and Phadke 2002;Chattopadhyay 2006). It has been reported that attitudes toward termination of fetuses with thalassemia major were associated with religious practices, particularly among Muslims where prenatal diagnosis is often refused on religious grounds (Zahed and Bou-Dames 1997;Ahmed et al 2006a).…”

Section: Introductionmentioning

confidence: 99%

“…It has been reported that attitudes toward termination of fetuses with thalassemia major were associated with religious practices, particularly among Muslims where prenatal diagnosis is often refused on religious grounds (Zahed and Bou-Dames 1997;Ahmed et al 2006a). A lack of knowledge about the disorder, its manifestations, survival rate, treatment availability, and psychosocial and cultural issues may cause barriers to optimal health care including disclosure of thalassemia status as well as to carrier testing (Chattopadhyay 2006). It has been empirical proven that community-wide education programs dramatically increase population awareness of thalassemia and reduce the number of children born with thalassemia major (Angastiniotis et al 1986;Gill and Modell 1988;Ahmed et al 2002;Samavat and Modell 2004).…”

Section: Introductionmentioning

confidence: 99%

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

2011

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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.

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“…It has been reported that attitude towards prenatal diagnosis and termination of pregnancy affected with β-thalassemia major are associated with religious practices, particularly among Muslims where prenatal diagnosis is often declined on religious grounds (Zahed and BouDames 1997;Alkuraya and Kilani 2001;Ngim et al 2013). Lack of knowledge among the general population, including high-/low-risk communities and health care professionals, about the disorder, its manifestations, survival rate, treatment availability, and psychosocial and cultural issues may cause barriers to optimal health care of the affected as well as to carrier testing of β-thalassemia (Chattopadhyay 2006).…”

mentioning

confidence: 99%

Attitudes and beliefs among high- and low-risk population groups towards β-thalassemia prevention: a cross-sectional descriptive study from India

et al. 2017

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β-thalassemia is an autosomal recessive blood disorder caused by gene mutations that affect all aspects of β-globin production. In majority of Asian countries including India, the frequency of β-thalassemia is closely intertwined with social, cultural, and religious issues of the respective country. Several national level screening programs imparted education regarding β-thalassemia, but follow-up evaluation revealed that education was not effective. It has been hypothesized that the beliefs and attitudes, carrier screening, and education among Bhigh risk communities^will have far-reaching implications towards β-thalassemia prevention in the country. The present study is aimed to investigate attitudes, intention, and behavior of β-thalassemia high-and low-risk ethnic groups towards carrier screening and education. A structured questionnaire on knowledge, attitude, and practice regarding β-thalassemia was administered on 926 individuals belong to Arora, a high-risk ethnic group for β-thalassemia (347 rural (AR) and 202 urban (AU)) and 377 cosmopolitan commoners (CC) aged above 18 years of both sexes. To understand the relationship between various questions, Pearson's correlation test and factor analysis was performed. The responses were further categorized into the theory of planned behavior (TPB) constructs with the measures of the main constructs reported as a mean. Various dimensions of knowledge, attitude, and practice reveal that the urban groups (AU and CC) are better aware of the disease Bβ-thalassemiat han the rural group (AR) who witness suffering at close quarters. The AR group is more positive for preventive measures than the urban groups. Significant correlations and factor analysis show Bintentions^for premarital and prenatal screening highly loaded as outcome behaviors. The Ajzen's BTheory of planned behavior^support that the Bintention^and Bperceived behavior control^are better predictors of Boutcome behavior^compared to Battitude^and Bsubjective norm.^As this study is crosssectional and descriptive in nature, the constructs of the theory should be considered as perceptions. However, we believe the patterns observed are indicative of Bpredicting behavior^that has far-reaching implications on health planners and administrators in designing β-thalassemia screening and prevention program.

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‘Rakter dosh’—corrupting blood: The challenges of preventing thalassemia in Bengal, India

Cited by 55 publications

References 26 publications

Parents' experiences of universal screening for haemoglobin disorders: implications for practice in a new genetics era

Parents' experiences of universal screening for haemoglobin disorders: implications for practice in a new genetics era

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

Attitudes and beliefs among high- and low-risk population groups towards β-thalassemia prevention: a cross-sectional descriptive study from India

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