Although the main reason many of the parents we talked to agreed to enrol their children in trials was their child’s health
, parents also thought about the importance of improving the treatment and care of other children and helping medical research.
In this section we focus on helping medical science and other reasons. The idea of improving care and making life better for their own and other children in the future was a common reason for parents wanting to enrol their children in trials. Watching their child cope with illness was, in itself, distressing for parents. Agreeing to enrol their children in a clinical trial could help their children, other children and medical research, and these were all positive things. For some parents the addition of personal experience and other family members’ health were also reasons for enrolling their children.
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. The UK Clinical Research Collaboration booklet ‘Understanding Clinical Trials’ includes a useful section on the risks and benefits of trials (see resources
Some parents mentioned a more general moral duty. Parents described this as ‘giving back’ in gratitude for the care their children had received. This often included the idea that others had put themselves forward in the past for research, which their children were now benefitting from.
Rachel’s background in clinical trials helped her to understand how important they are and when the opportunity came for her children to take part in a swine flu vaccine trial, she felt this was something she could contribute to. She was unusual amongst the people we spoke to in not really seeing any particular benefit for her children.
Most parents we talked to put their children’s health first, but helping others was often an additional reason to take part. Jo’s son took part in a trial of migraine medication and commented, “I think you’re always going to put your family before you put others. That’s not in a nasty way. It was a case of ‘we can do something here that might help Dan, and in the long term it might help everybody else.”
Grave’s disease is the most common cause of an overactive thyroid and is rare in young girls. Quite often parents said they were happy to enrol their children as they could see few negative consequences, as Vicky explains.
Others mentioned the fact that the trial did not involve invasive treatments or tests as an important factor. One parent said it was easy to take part because they lived close to the hospital so there was little disruption to their lives.
Being able to offer their opinion about a treatment was another reason some parents were happy for their children to take part. For example Jane says, “I think, if I thought it would help someone or I thought my opinion might have an impact some way, then I was happy to do it.”