Mohini - Interview 56
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Mohini is 12 years of age and was diagnosed with acute lymphoblastic leukemia at the age of 9. Approximately one year later, her parents were asked by the consultant if they would be willing to enter Mohini in a clinical trial. Mohini was unaware of this at the time; however, her parents discussed it with her at home. They didn’t have to make a decision straight away and discussed together some of the risks and the benefits of taking part.
Mohini says that her parents wanted the decision to be hers. They felt that because it was her life and her future; it was important she had the final call and they would support her in whatever decision she made. They discussed together and Mohini also spoke to some other family members.
After much thought and talking with her parents and other family members, Mohini decided to decline to take part.
Her message to health professionals and those who are recruiting young people to take part in clinical trials is to talk to the young people and not just parents.
She would consider taking part in future clinical trials if they didn’t involve more tablets or medication. She says she has had so many toxins in her body and doesn’t really want any more. However, if it involved talking about experiences and sharing views and completing questionnaires, she would be more than willing to help.
Mohini thought randomisation was quite a risky strategy, but once the consultant explained it,...
Mohini thought randomisation was quite a risky strategy, but once the consultant explained it,...
For some trials, a payment may be appropriate says Mohini, but for many trials knowing that...
For some trials, a payment may be appropriate says Mohini, but for many trials knowing that...
Mohini is pleased to know that the results of the trial are now published and a leukaemia...
Mohini is pleased to know that the results of the trial are now published and a leukaemia...
Doctors and nurses need to talk to young people says Mohini and not just their parents. A close...
Doctors and nurses need to talk to young people says Mohini and not just their parents. A close...
Mohini says that taking part in a trial that involves intensive treatment is a real commitment to...
Mohini says that taking part in a trial that involves intensive treatment is a real commitment to...
Mohini feels that doctors need to understand that when young people have to take lots of...
Mohini feels that doctors need to understand that when young people have to take lots of...
As a result of a clinical trial, a treatment for leukaemia used in Europe and the USA is now...
As a result of a clinical trial, a treatment for leukaemia used in Europe and the USA is now...
Although Mohini understands about clinical trials, it can be hard to explain what it means to...
Although Mohini understands about clinical trials, it can be hard to explain what it means to...
Mohini thought it was a bit unfair that her parents got all the information first.
Mohini thought it was a bit unfair that her parents got all the information first.
She says young people can understand complex information and doctors shouldn't underestimate...
She says young people can understand complex information and doctors shouldn't underestimate...
It's important young people of all ages are given the opportunity to give their consent to take...
It's important young people of all ages are given the opportunity to give their consent to take...
Making the decision about whether to take part in a trial was not easy. Mohini decided not to...
Making the decision about whether to take part in a trial was not easy. Mohini decided not to...
Having time to make a decision about taking part in a trial was helpful to Mohini and she was...
Having time to make a decision about taking part in a trial was helpful to Mohini and she was...
Mohini's mum and dad had different views about whether she should take part, but knowing that her...
Mohini's mum and dad had different views about whether she should take part, but knowing that her...
Even though it may have been better for Mohini to take part in the trial, she has no regrets...
Even though it may have been better for Mohini to take part in the trial, she has no regrets...