Jhon – Interview 02
When Jhon was born his parents took part in a lung and asthma study that has involved annual questionnaires. Jhon recently took part in the second stage of this long term study at his school which was an allergy survey.
Jhon is 13 years of age. He currently attends Secondary School and enjoys making a difference;, swimming, reading and being with friends. Jhon was diagnosed with Osteogenesis Imperfecta (causing bones to break easily) when in the womb and continues to have regular treatment and check-ups at his local hospital. He has had biopsy tests for himself, and also for research. He also acts as a Dumm for student doctors to try out their skills when he is having treatment for his Osteogenesis Imperfecta.
Jhon is supportive of research and enjoys taking part. Jhon says that it is important for young people to take part in research to help others. Having taken part in the second stage of a long term study (a cohort study) at school, Jhon said he would like more detailed information about studies to be given to young people. He particularly feels that the researcher’s need to be honest about any potential side effects and that the results of studies should be explained clearly and in a way that young people can understand.
Jhon also talks about the reward for taking part. He feels that some sort of recognition for taking part is important, even if it is vouchers at the end of the study. Jhon feels that recognition is very important if the clinical trial is risky;, but should not be confused with being a bribe;.
In giving advice to other young people who may be thinking of taking part in a clinical trial or a research study, he says, If you;ve got any questions write them down so you don’t forget. And then when you get there or before you get there contact them, or speak to your parents and say, Could you answer these questions for me He continues Just make sure you;ve asked your questions before you do it because it’s important that you know what you;re doing before you go ahead and do i.