Many people struggle to understand the complexities of genetic problems in pregnancy and find medical language difficult to understand, particularly when faced with major decisions such as whether to terminate a pregnancy. A recent study, funded by the Economic and Social Research Council (ESRC), investigated how Britain's Bangladeshi community understand the disorders, and make decisions about testing and screening in the light of health care and religious opinion.
The researchers found language difficulties added a great deal of misunderstanding about the nature and cause of disorders. There were difficulties, for example, over the distinction between being 'affected' and being a 'carrier'. The nature of risk, and the kind of inferences that can be made from genetic testing, can also be a source of confusion. While earlier studies have found that similar confusions are common among the general public as well, the difficulties of translation can make minority groups, such as the Bangladeshis, especially vulnerable to such misunderstandings.
Those who have English as a second language are not alone in struggling to understand the complexities of medical terminology. Researchers find that these misunderstandings are not solely connected to language as a barrier but commonly to misinterpreting medical information. Such as a 75% chance of a having a child that is not being affected by a particular condition can be interpreted as having a child that is 75% normal.
Problems linked to use of interpreters are compounded by the fact that there may be medical terms for which there is no appropriate translation. Women with limited English may be entirely reliant on their husband, or another family member, for an explanation of what consultants or genetics counsellors have said. As a result, information they receive may be inaccurate, misunderstood, or incomplete.
Senior Research Fellow, Dr Santi Rozario, said: "Genetic disorder is likely to be understood by Bangladeshi Muslims in Britain, at least initially, as a biomedical problem for which conventional medical treatment is appropriate, and indeed fard (obligatory) as an Islamic duty. Bangladeshi families will therefore almost always look to the British medical system for assistance."
The research shows us that the issue is not simply one of numbers or availability of interpreters and it is a complex and difficult time for patients. Greater understanding of the language barrier and possible misunderstanding need to be considered when dealing with patients whose first language is not English.
|Contact: Danielle Moore|
Economic & Social Research Council