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Shared decision making

Interview 24- Screening for beta thalassaemia

Age at interview: 32
Brief Outline: Both parents are beta thalassaemia carriers. Had CVS in first pregnancy. Baby diagnosed with beta thalassaemia major and they continued the pregnancy. In three pregnancies since they chose not to have antenatal diagnosis and none of the children is affected. Some audio clips in Mirpuri. Sister-in-law also interviewed in English.
Background: Married housewife with four children aged 6, 5, 3 and 9 months. Ethnic background/nationality' Pakistani.

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She did not have diagnostic antenatal screening because she knew she would not end the pregnancy,...

She did not have diagnostic antenatal screening because she knew she would not end the pregnancy,...

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 (English translation, audio clip in Mirpuri).

 
We said that we would not have termination. We thought that we will get checked, and we'll know, but we will not have a termination. Even if we get checked, we would not terminate.
 
At least it will come into the world. Okay, it will see whatever life it has with its mother and father.
 
So then you had your daughter with thalassaemia?
 
Yes.
 
After that, why didn't you have tests for your other children?
 
I didn't have the test because there wasn't any point in getting checked, because neither did we want to have a termination and neither did we think there was any point. Now there was no point in me getting my daughter tests. 
 
And did you clearly say no each time?
 
Yes, each time.
 
And then when your children were born, when you were pregnant, what feelings did you have, during pregnancy, about thalassaemia? 'What will happen if the child has it?'
 
I left it to Allah. I was dependent on the beautiful Allah, that Allah will do whatever. The individual cannot do anything.
 
 

Her brother and sister-in-law felt pressured into having an antenatal diagnostic test while...

Her brother and sister-in-law felt pressured into having an antenatal diagnostic test while...

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 Sister-in-law' I was there when she actually went to get the screening [CVS] done in [city]. But before that that's all they were pressured into, “Have the screening done. It's for your benefit.” And after that it was like, you know, “It's, at least you'll find out, and you can abort the child.” Which they didn't believe in. As I say, I mean there wasn't much information given to the parents for them to actually make their own mind as to, “Is it an option? Have we got an option? Or do we have to have the screening done?” At that time they thought they had to have the screening done. That's why they went and did it. But it was I think when time went by that they found out that it was just something if they didn't want to do it they had an option not to do it.

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