Clinical trials: Parents’ experiences

Withdrawing your child from a trial

It is important to know that you can withdraw your child from a trial at any point, without giving a reason, and without it affecting your child’s care. Parents we talked to remembered that this was made clear to them and they never felt any pressure to continue. The reasons for withdrawing included the time and demands of the trial, uncomfortable procedures and tests, and their children’s requests to stop. Sometimes being part of a trial involves quite a time commitment, for example, attending extra appointments, travelling to and from hospital, taking time off work, or spending time being interviewed or completing questionnaires (see ‘What is involved: time commitment, costs and payment’ and ‘What is involved: appointments and monitoring’).
 
The majority of parents we talked to felt it was important to respect children's wishes to withdraw from a trial. (See also ‘Involving children in decisions’.)
 
The length of a trial can vary from a single day to weeks, months and even years. Two parents we interviewed withdrew their children from a trial. Both children had taken part in a randomised trial on growth hormones. For one parent the decision to withdraw was at her daughter’s request. She had taken part for five years and just felt it was time to stop.
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For another parent, the main reasons for withdrawing were the juggling of hospital appointments with school, work and caring for her family, and her son’s request to stop because of the discomfort he experienced from the tests he had as part of the trial. Sometimes having to explain to a child why the tests are important can be difficult.
A few other parents had briefly considered withdrawing from the trial when their child experienced some side-effects, but decided to continue. For the remaining parents, the thought of withdrawing from the trial had not arisen. However, they would consider it if their child asks to stop or if there were any concerns such as side effects. It is important to report any side effects promptly. The researchers will be able to help manage the side effects, or advise whether your child should stop taking part. Withdrawing from a trial because of side effects is entirely reasonable and no-one should feel that they have to keep their child in a trial or that they have failed if they pull out.
 
Even though Lena’s daughter experienced a high temperature after receiving her second dose of swine flu vaccine, they continued with the trial. They kept an eye on their daughter and knew that they could ring the researchers if they were worried about anything.
None of the parents we talked to withdrew their children from a trial because they felt the treatment was not working.
 
We talked to two Research Nurses who emphasise the importance of understanding that both parties, parent and child, need to be happy to take part and that withdrawing from a trial will not affect their child’s treatment and care. A child’s health and happiness always comes first.
Randomised trials are done when we don’t know which treatment is best, in other words when the relative merits and disadvantages of different treatments are uncertain. It is important to realise that, on average, new treatments are as likely to turn out worse as they are to turn out better than existing treatments. This means that, going in a trial, everyone, regardless of which of the treatment groups the computer allocates them to, must have similar chances of a good outcome. If, in spite of the treatment uncertainties that the trial has been designed to address, people would strongly prefer one of the treatments being compared, they should not volunteer for the trial. 

Last reviewed July 2015.
Last updated June 2013.

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