Clinical trials: Parents’ experiences

Reasons for wanting your child to take part: child's health

Parents enrol their children in trials for a range of reasons. The main reason for many parents we talked to was to benefit their children’s health. However, parents were also thinking about helping to improve the treatment and care of other children (see ‘Reasons for wanting your child to take part: helping medical science and others’).

In this section we focus on children’s health. (See also ‘Reasons for wanting your child to take part: helping medical science and others.’) All the children of the parents we interviewed had a condition or were healthy volunteers for preventive care such as vaccine trials. The hope of improving or protecting their children’s health was the main reason for agreeing to enrol their child. This might include getting a new drug or treatment that might help their children; being screened to be reassured or get an early diagnosis; the chance of getting access to care they felt would be better or more specialised care, and being more closely monitored. Their children’s health and safety in taking part in a trial were always a top priority before agreeing to enrol them in any trial.

However, it is important to bear in mind that until a trial has been completed, no-one knows if a new treatment is better than the standard or existing treatment. ‘New’ does not necessarily mean ‘better’. Indeed, new treatments are as likely to be worse than existing treatments as they are to be better.

Some evidence has suggested that people who take part in trials, whatever treatment group they are allocated to, have better health outcomes than people who do not take part in trials. This is known as the ‘trial effect’. However, more recent reviews of the evidence have shown no significant differences in health outcomes for people given similar treatments within a trial or just as part of their normal care.
However, sometimes people felt being in a trial gave them access to something they would not otherwise get.
For the parents that enrolled their children to the swine flu and meningitis vaccine trials, the primary reason was to take the opportunity to give their children early protection against what are perceived as ‘nasty viruses’.
For some parents whose children had a health problem, such as asthma for example, this was another reason for wanting them to take part in a vaccine trial.
Although the main reason Tina enrolled her two children in a swine flu vaccine trial was to give them early protection against the virus, she also felt it would help them understand how medical research works. After speaking with both her children about the trial, they were both keen to find out more and were more than happy to take part.

Last reviewed September 2018
Last updated July 2015.


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