Clinical trials: Parents’ experiences

What is involved in a trial: appointments and monitoring

When your child takes part in a clinical trial it usually involves some visits to a hospital clinic, GP surgery or research unit. Sometimes an overnight or longer inpatient stay may be needed. This depends on the type of trial and the intervention being tested. For some parents the trial took place when their child was in hospital.
Some trials may involve treatments that can be taken at home, such as tablets or self-administered injections. In these cases, the research team or health professionals involved in the trial may come to your home to support you and your child through the trial.
Sometimes the demands of a trial may interfere with other activities and sometimes other members of the family may become involved. (See also ‘What is involved in a trial' time commitment, costs and payment’.)
Involving the family in giving Lisa’s son his injections was a great help, especially for family outings. It is encouraging that her son has now learned to do the hormone injections himself as part of a daily routine.
Whatever the intervention, staff running the trial will probably want to monitor your child’s progress and this may mean attending appointments for tests and discussion, as well as for treatment. (See also ‘Side effects’). Dr William van’t Hoff explains what parents might expect when their children take part in a clinical trial.
John’s daughter took part in a trial to monitor blood glucose levels during intensive care. After discharge she will be monitored for a year to check on her progress. John says “The information supplied was excellent”.
As well as attending appointments, you may be asked to record what is happening in other ways, for example, by keeping a diary, filling in a chart, or completing questionnaires. Jo’s son had to take tablets daily for six months. Although the care and support of the nurses and doctors was “fantastic”, Jo found it “a little bit daunting, to realise that eventually he’d be on eight tablets a day for quite a few months”.
Jo’s son is still in the trial, and is currently in an eight-week gap without the trial tablets to see how many migraines he has. After this period Jo will take her son back to the hospital for an assessment and further treatment, as required.
Children who took part in vaccine trials, had blood samples and injections as well as health monitoring at home. Parents were asked to record changes in their children’s temperature, redness or soreness around the injection site, and any other changes observed in their children’s health. If parents were concerned about anything they were asked to seek medical advice immediately. A common dislike among children was having blood samples taken. Both Lena’s and Rachel’s children took part in swine flu vaccine trials.
In addition to a child’s physical health and wellbeing, researchers may ask questions on activities of daily living in order to gather more information as part of the trial. In these cases questionnaires may be used to measure physical symptoms and practical aspects of daily living, such as exercise, school and social activities, as well as to find out how someone’s emotions or mental state are affected. Some parents said that they could not see why certain questions were being asked of them or their child.

Gary and his son took part in a randomised trial to assess hospital versus home management of newly diagnosed childhood diabetes. Gary and his son had separate questionnaires to complete and return to the researchers. (hear Danny’s story here.)
From the age of 16 years, your child can give consent to take part in a trial. Alison’s son has cystic fibrosis and has taken part in many trials since the age of seven (hear Robert’s story here). More recently he has consented to take part in a gene therapy trial and as Alison says, sometimes it is useful if parents know what is involved.
Parents we talked to were generally very pleased with how the trial was organised. Most felt that staff running the trial were always available to ask any questions and give reassurance.

Last reviewed September 2018.
Last updated September 2018.


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