Clinical trials: Parents’ experiences

Parents messages to health professionals

On the whole parents were very satisfied with the organisation of the trials their children took part in and very pleased with the care and support received from the research teams, doctors and nurses. As John says, “The information supplied was excellent, the support from the doctors and the nurses involved was superb.” Parents felt reassured that their children’s health always came first. (See also ‘Information parents receive when invited to enrol their child’ and ‘Making the decision about enrolling your child’.)
Some parents suggested ways to improve their experiences and the experiences of parents and children in the future. Suggestions included how parents are approached, information given to parents when invited to enrol their children, appointments, and feedback of trial results.

John says that sometimes the doctors and nurses are almost too apologetic when approaching parents. This may cause some parents to feel a little uncertain about what is being asked of them.
As Alison says when approaching parents at a critical time, the best way to approach them and inform them will vary from parent to parent. Trust and the quality of the relationship with the doctor or nurse can play a huge part when parents are making the decision about enrolling their children.
Others talked about the importance of having enough information and not feeling too rushed.
Many parents talked about the information they received when invited to enrol their children. Suggestions to improve information ranged from using fewer acronyms for trial names, information that is easy to read with the use of simple explanations, to more explanation about the purpose of the trial and having time to read information.
Alison also feels that research studies need to recruit people from a wider range of backgrounds, including those who have difficulty reading information.
Tina says that having information that is more at the child’s level might be better, including how procedures are explained. Tina refers here to when the term “just a teaspoon” was used to explain how much blood was going to be taken in a blood sample.
Some parents would have liked more explanation of the purpose of the trial. Both Jane and Vicky wanted to know more about the questionnaire they completed and how it related to the information pack their daughters had received as part of the trial on the management of diabetes in children and young people.
In terms of what was involved in the trial, many parents were pleased that wherever possible appointments were made alongside routine clinic appointments and home visits made it easier for parents who had other children to care for or had a distance to travel. Others felt that some of the tests, for example blood tests and vaccine injections, could have been done at their local GP surgery.
Sometimes trial appointments can be quite long and having entertainment provided for children such as toys and games made it easier to keep them occupied. In addition, some parents were offered weekend appointments which meant they did not have to take time off work.
Most parents felt that they would like to be informed of the trial results. Parents felt it was important that their children received some feedback too. (See ‘When the trial ends: feedback of trial results’.)
Emma would like to see the evidence from trials being reflected in practice more quickly, especially when new treatments which have been shown to be effective are less invasive for the patient.

Last reviewed September 2018


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