Making the decision to take part in a trial can often be difficult and children and families are often faced with a great deal of information that may not make a great deal of sense? More often than not the information they receive about a study is too long and complex, adding unnecessary barriers to participation.
It is really important that children and families are given information that is accessible to all ages and abilities and they fully understand what is going to happen to them throughout the duration of the study. We as a group have reviewed 100s of patient information leaflets and normally give very similar feedback, for example:
- Too long (18 pages in some cases)
- Too much jargon
- Too complex
- Too technical in parts
- Lacks colour
- Looks dull and uninviting
The MMIs will be developed with the help of children and adolescents with long-term health conditions (and some parents too) The research team will also be supported throughout the project by a Patient and Parent Advisory Group made up of four young people (including several members of GenerationR Liverpool Group) and parents.
You can follow the work of GenerationR Young People’s Advisory Group via @GenrYPAGs and www.generationr.org,uk
For further information about the TRECA study visit their website: