Clinical trials: Parents’ experiences

What is involved in a trial: time commitment, costs and payment

The length of trials can vary from one-day to three and more years, so some make greater demands than others. The demands of the trial and the practical implications, such as travelling, time off school and work, holidays and money, were things some parents considered.
 
Several people described ways staff made it easier for people to take part, such as flexible days and times for appointments, organising parking, combining research appointments with routine hospital visits, or research staff offering home visits. At some clinics, having toys, TV, books and games for children to play with whilst waiting for appointments helped make participation easier.
Ann and her daughter Emily are taking part in a randomised trial to improve treatment for Grave’s disease (a rare condition in young girls that affects the thyroid glands). Emily has to take tablets every day as part of the trial and attends the hospital regularly to be monitored. They will be in the trial for four years. Ann says it has been hard, but she doesn’t mind the extra demands of the trial because it is helping her daughter and other young girls who may be diagnosed with Grave’s disease in the future. 
Alison’s son took part in a growth hormone trial that involved hospital appointments, extra blood tests and bone density scans. The fact that the hospital was close to their home made it easier. However, after two years Alison decided to withdraw her son from the trial. (See also ‘Withdrawing your child from a trial’.)
In Linda’s case, the trial was for six months and required monthly visits to the hospital for tests and treatment. Fortunately, Linda was on maternity leave at the time and didn’t require time off work.
On occasion, some parents said their children missed a few days of school.
Emma had to learn a new dietary regime for her son, which was quite time consuming.
None of the parents we talked to enrolled their children in a trial that involved a payment for taking part. Some parents would have been concerned if money had been offered as an incentive for taking part. Some felt it would be unethical or would attract people for the wrong reasons. One parent said she would have found it insulting and would have refused to enroll her son if a payment had been offered. There was a feeling that being paid to take part might lead people to think there was a substantial risk involved and this would have made parents more cautious about enrolling their child.
Sometimes children received a voucher as a way of saying thank you for taking part. Parents felt that this was a nice gesture although no-one felt it would or should be a reason for taking part, and in fact it was usually a surprise.
Alison feels that compensating parents for time is much harder than travelling and parking and wonders whether a payment upfront would attract or deter parents and young people from taking part.
Most parents received expenses for travel and car parking during or at the end of the trial. Parents had mixed views about this. Some parents didn’t want to claim any expenses for travel or parking although they could see there may be a need for it.
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Jo was thankful that the nurses came to her home with her son’s medication.
Linda wanted to give her expenses to charity and some parents put them in their child’s savings account.

Last reviewed July 2015.

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