Clinical trials: Parents’ experiences

Messages to Parents

Overall parents we talked to were pleased to have enrolled their child in a clinical trial. They felt they had had a good experience and most felt their children had benefited from taking part. Many said they would consider enrolling their children in future trials. (See also ‘Views on future trials’).
 
Based on their experience, parents gave some messages for other parents who may be thinking of enrolling their children in trials, such as getting plenty of information and asking questions, listening to your child and involving them in the decision, being clear about any side effects, and being open to the possibility of your child taking part.
Sometimes researchers and health professionals use terms that parents may not understand and there may be a lot of information to read and take in. It is important that you ask about anything that is not clear to you or your child.
A doctor, nurse, or other researcher should always ask you whether you consent to enrol your child in a clinical trial. Your child cannot be entered in a trial if you do not give your consent. It is important that you have enough information to make an informed decision and an opportunity to ask as many questions as you like. See also ‘Information parents receive when invited to enrol their child’ and ‘Making the decision about enrolling your child’.
 
A few parents found it helpful to speak to others but stressed that, in the end, it has to be your own personal decision.
Parents also felt it was important to involve children in the decision, where possible, and listen to what they feel about taking part. (See also ‘Involving children in decisions’.)
It was important to parents to trust in health professionals, and reassure themselves about the safety of the trial and knowing that they could withdraw their children. (See also ‘Making the decision about enrolling your child: parental consent’ and ‘Withdrawing your child from a trial’.)
 
Lena’s and Rachel’s children took part in a swine flu vaccine trial. Knowing that the vaccine had already been licensed was reassuring to both parents. Ultimately parents have to be sure they are happy to enrol their children. In Rachel’s case, her children enjoyed taking part and being monitored.
Ruth advises other people to think carefully about why they want their child to take part and what is involved.
Of course, when you are considering enrolling your child in a trial there can be a mix of things to consider, including the benefit to your child’s health, the value of helping to increase knowledge for future children, as well as what is involved in terms of time and commitment. Both Alison and Julie talked about the individual cost compared to the wider implications of helping to advance health care and the future of our children’s health.
Steve’s son has been taking part in a research study since he was born and likes to feel they are both helping to advance medical knowledge for other children in the future. (See also ‘Other types of medical research’.)

Last reviewed July 2015.
Last updated June 2013.

 

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