Clinical trials: Parents’ experiences

Other types of medical research

Some parents enrolled their children in research studies that were not clinical trials. Sometimes research is undertaken to get a better understanding about children’s health or a health situation, rather than to test or compare treatments, drugs, or other types of care. Sometimes parents used the word ‘trial’ to describe other types of research. (See also ‘Why do we have clinical trials in children and young people’ for an explanation of the different types and stages of clinical trials.)
Steve has been taking part in a longitudinal study on respiratory conditions in children since his son’s birth; his son is now aged 12 years. His son has osteogenesis imperfect, but Steve says he doesn’t think this was the reason they were invited to take part. Every two years Steve completes a questionnaire asking about his son’s health, such as how many cold’s and cough’s he has had. Collecting information among large numbers of children helps to provide better information about children’s health over a period of time.
Steve says that the information has been a bit vague and he doesn’t know when the study is going to end and he hasn’t received any feedback. He says that providing feedback to people who participate in research is important and he would like more communication from the researchers about the study and its progress.
Recently Steve’s son, Jhon, has been asked to take part in the second stage of the study, which involves allergy testing. This was a surprise to both of them. However, they are willing to continue and contribute to advancing knowledge, helping research and children (hear Jhon’s story here.)
Sandra and her daughter, aged nine, were invited to take part in a study to improve knowledge and prognosis of juvenile dermatomyositis (JDM). JDM is a rare condition that affects children under the age of 18 and affects approximately two children per million. It is an autoimmune disease where the body’s own immune system attacks the body, skin, muscles, and internal organs. 
Sandra was keen to take part she says: “After everything we had been through with my daughter that was just a tiny little thing that wasn’t even on the scale to me. I just knew that I wanted to do it because obviously it’s research to help, and because it’s so rare, I thought her information might have been more important than a lot of other children’s because she was so severe”.
John’s daughter received heart surgery when she was a baby and since then they have been taking part in a longitudinal study that requires periodic check-ups and the completion of a questionnaire. John is pleased to be taking part and helping other children as well as his daughter. He says that filling in a questionnaire and going for check-ups every couple of years doesn’t take much time.
Catherine took part in a survey that involved completing a questionnaire and a follow-up telephone interview asking about her son’s health before and after having an operation for a second hernia. This was a study Catherine was interested in and would be keen to know if it changes policy or practice within the hospital.
Nikki and Chris’s daughter took part in a one-day research study. After their daughter had recently taken part in a screening trial they were more open to enrolling her in other studies. Although they agreed to take part, they can’t remember what the purpose of the study was and they haven’t had any feedback. However, it all seemed straight-forward and wasn’t invasive for their daughter, so they were willing to take part.

Last reviewed September 2018


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