Its all ‘Gobbledegook’ Part 2 – supporting children and young people when making decisions about taking part in research

This is the second post in a series on improving the way we communicate with children, young people and families about participating in health research. In Part 1 entitled ‘Its all Gobbledegook’ I highlighted that writing for patients (especially young patients) and their families about a particular piece of health research or clinical trial is quite a difficult task for many researchers, whose specialised knowledge can often hinder effective communication by producing lengthy, difficult to read and understandable information.  This has implications for children and young people’s understanding of health research and trials, which may affect their decision to participate in a research study.

Making progress

As previously mentioned in Part 1, I have the privilege of being part of a research team undertaking a study called TRECA (TRials Engagement in Children and Adolescents) funded by the NIHR Health Service & Delivery Research UK Program.  The study is currently developing online multimedia websites for use in paediatric clinical trials.  The first phase of this study was to understand what information children, young people and families value when deciding about healthcare trial participation.

Phase one – TRECA Findings

The study team interviewed sixty-two people (21 children and young people with long-term health conditions, 24 parents and 17 professionals)from one UK children’s hospital and a Young Person’s Advisory Group (YPAG) based in Birmingham.

When asked what was important information to help with deciding to join a trial, children, young people and parents highlighted the following:

• What will participation involve?
• What the trial was testing
• Potential benefits and risks of participation
• Knowing they could leave the trial if they later changes their minds

Interestingly young people and parents trusted trial teams to follow regulatory and quality requirements and therefore did not think such information was a priority to be included, although logo’s of trusted organisations could lend credibility.

These findings build on the opinions we have obtained from members of GenerationR YPAGs for many years and is another great step towards developing child and family appropriate information to aid the decision to participate in health research and build the evidence base for paediatric healthcare.

You can find the research paper with full findings in this recently published paper.