Nutan – Interview 45

Nutan was invited to enrol her daughter in a trial on the management of diabetes among children and young people. The trial was fairly straightforward and involved the completion of questionnaires over a period of three months.

Nutan is Asian Indian, aged 37 years, married and works part time in the retail trade. Her daughter aged five years was diagnosed with diabetes at age 3 years.

Nutan was invited to enrol her daughter in a trial on the management of diabetes among children and young people by the research nurse at the hospital. Nutan says she felt it would be good to take part in the study to help other parents of children with diabetes, especially parents new to diabetes.

Everything was clearly explained by the research nurse and Nutan was given information to take away and read.

The trial was fairly straightforward and involved the completion of some questionnaires over a period of three months. Although Nutan didn’t understand why some of the questions were being asked, she was happy to complete it to help other parents and children in the future. Questions she didn’t understand included questions about parking travel expenses to and from the hospital. She was also unsure about some questions as they related to school and at the time her daughter attended nursery. However, the research nurse was always available to answer any questions.

As there were no changes to her daughter’s treatment, this made the decision to take part easier. She says that if there were any side effects or a risk to her daughter’s health and wellbeing then she would need more time to think about this and would probably have to decline.

Nutan says it is important to take part in research to help advance medical knowledge.

Having questionnaires that are age-related may be better. Nutan was unsure how to answer some of…

Age at interview 37

Gender Female

If there was a way of improving that whole experience that you had, do you think there would be anything that could be improved in future similar trials?

I can’t think of anything, because it was so quick. Only the booklets that I got in the beginning. Because I was going to diabetes, managing diabetes and it was difficult to fill in, fill in those. And she was not also in the school and most of the questions were when she is going to school.

So some of the questions weren’t relevant?

Yes. So, so maybe the questionnaire should be according to the age.

Yes. Then at that moment the brain goes blank, because she’s not going to school, whether to fill in, or whether not to. She was going in the nursery, so she wasn’t in the school but she was going to the nursery. So whether to fill in the form, question, or whether not to. Really difficult to decide on the, them. Because it was related like homework, school meals, things like that. So it was difficult.

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When her daughter was diagnosed with type 1 diabetes; it was a shock. The nurse explained about…

Age at interview 37

Gender Female

It was my daughter’s nurse who invited me to, for this study. And I thought it would be good to take part in the study so that like parents like me who are facing diabetes with their children, the, it might, the study might get new things and would be, the study could help new parents, I think the parents who are new to diabetes, would help in any way to them, in a better way.

And how did she approach you?

She, when my daughter got diagnosed she came in the middle of night to the hospital. And it was really very surprising that she’s all 24 hours on job for this study. So that strike me that this study is really a big thing to help people and to get the better results in the future, to get better things in the future. So she spoke to me, she explained me about this study, and I was really encouraged to take part in that.

Did she give you anything to read as well as explain?

Yes, she gave me some questionnaires to answer and she gave me some notes to explain about the study, what is going on and what it will be.

Did they, did you understand what the purpose of the study was?

As far as I know the purpose of the study, some questions I didn’t know why they were asked. Like, How much do you pay for, for the taxi? or, How do you come?Is the parking, is a problem? Because if we are not getting help in that, why are we asked about that? So I didn’t understand some questions, but I thought it may be part of the study and it may be for the better in the future. So I didn’t mind that.

And what, when you had the information as well, written information, did you understand everything that they’d said? Were there any words or terms that you didn’t understand from that?

Some, some words I didn’t understand, but whatever I didn’t understand the nurse was so good, she gave me her phone number and I just called her; even if I called her at, in the middle of the night she responds and she explains the, what the things mean in the notes.

Tell me a bit more about why you felt it was important to take part in this sort of study on diabetes?

Because I didn’t know anything about diabetes. And it, it came into my life as a blunder. So I thought like I am facing this, other parents might come across the, the same situation, and if I could help a little to get a, better for them taking part in this study. So that’s why I thought it is good.

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