By Liverpool YPAG,
Making the decision to take part in a trial can often be difficult and children and families are often faced with a plethora 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.
The GenerationR Young Person’s Advisory Groups believe it is really important that children and families are given information that is accessible to all ages and abilities, and that they fully understand what is going to happen to them throughout the duration of a study. We as a group have reviewed 100s of patient information leaflets and normally give very similar feedback, for example:
The TRECA Study
In this new digital age we believe that researchers should look at alternative means of providing information to children and families. So we were delighted to hear about the TRECA study, which stands for TRials Engagement in Children and Adolescents. The project aims to improve the information children and adolescents are given when they are invited to join a healthcare trial. The project has developed two multimedia information resources (MMIs), one for younger children and parents, and one for older children, adolescents and parents. The MMIs are websites, which contain a mixture of text, video, animations and diagrams.
The MMIs have been developed with the help of children and adolescents with long-term health conditions (including members of GenerationR Birmingham Group), parents and clinicians and researchers. The research team is also 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. This Group have helped to review the content and design of the MMIs. They have also been involved in other aspects of the study including the development of participant information sheets and the TRECA logo.
The TRECA study is now looking to recruit 6 UK trials to test whether the MMIs can improve recruitment and retention to healthcare trials, and improve the quality of decision-making regarding trial participation.
Without accessible and child appropriate information researchers will struggle to recruit children and families to research studies, thus impacting on the advancement of healthcare for children. We as young people have a key role to play in ensuring this doesn’t happen.
For further information about the TRECA study click on the following links:
Or contact the team on:
PPIE Lead for TRECA, Jenny Preston – firstname.lastname@example.org
TRECA study manager, Jackie Martin-Kerry – email@example.com or 01904 321826
TRECA study research fellow, Rebecca Sheridan – firstname.lastname@example.org or 01904 321079.
You can also follow Jackie on Twitter – @JMartinKerry