Clinical trials: Parents’ experiences

When the trial ends: feelings, future care and personal feedback

Sometimes a trial involves a one-off or fairly short commitment from parents and children. For these people the end of their involvement was not much of an issue. How people feel at the end of a trial may depend on the kind of relationship there has been between the research team and the patient. All the parents we talked to who had agreed to take part had had a good relationship with the research team and were pleased that their children had taken part.
At the end of a trial on dietary changes in children with epilepsy, Emma asked to keep the same neurologist who had supported her throughout the trial and after it had ended. Emma also had mixed feelings of regret of not starting the diet sooner, and was relieved that a clinical trial had now provided evidence that the diet may help children with epilepsy.
Emma has set up a charity ‘Matthew’s Friends’ that supports research into dietary changes for children with epilepsy.
Some parents feel a bit abandoned or insecure after all the intensive involvement with the research team.
One of the main reasons parents gave for enrolling their child in a trial was to benefit or protect the children’s health. (See ‘Reasons for wanting your child to take part – child’s health’ and ‘Reasons for wanting your child to take part – helping medical science and others’.) When their children were no longer involved in the trials, most parents felt assured that their children would continue to receive the best care and treatment they needed. For parents who took part in trials with a longer term commitment, the trial sometimes became part of their lives. When a trial ends, or children are no longer involved it may lead to a mixture of feelings, such as relief or uncertainty, about what will happen next.
In contrast, Linda did not feel she wanted to know whether her daughter had the drug or the placebo. “They had said that they would break the code after five years but we’d moved and it’s one of those things where I keep thinking when I lie in bed, ’Oh I must remember to ring them’ and then forget to ring them. But certainly she had no ill effects from the trial. For me it was important that she live her life as her and not as a heart child.” 
For parents who had taken part in a vaccine trial, the main thing was their child receiving early protection against harmful viruses, such as swine flu and meningitis.
Most parents commented on how important it was to know about the results of the trial and to find out what the effects of the treatment were. This is discussed in ‘When the trial ends: feedback of trial results’. Parents felt it was important that their children know that they had made a real contribution that would improve care for others.
In screening trials, waiting for results can be a stressful time.
Full trial results are often not available for some time but personal feedback was important to parents. Alison’s son used his trial records to do a presentation at school.
For many children, long term follow-up will be a part of on-going treatment, but this may not be as intensive, or involve such closely monitoring. Of course this can apply equally to the ending of any long term period of care, whether it is within a trial or not.

Last reviewed September 2018.
Last updated June 2013.



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