Teenagers information needs
Adolescents' information needs in pharmacogenetic research
This is a 3-year project working with young people (aged 11-17 years), parents, and health professionals and researchers. We aim to identify the information needs of young people taking part in pharmacogenetic clinical research. We are trying to find out what young people need to know about pharmacogenetic clinical research before they, along with their families, can decide whether they want to take part. We are also equally interested in the ways in which young people prefer to be informed.
Young people's information needs in research are not well understood, and the purpose of this project is to address this issue. We are also going to use the findings from this research to produce information materials that can be used by young people and their families in pharmacogenetic and clinical research in the future. We will also make recommendations for those conducting research about how to meet information needs.
The research consists of a series of focus groups, as well as questionnaires and interviews, with young people, parents, and health professionals and researchers. We are interested in what these individuals can tell us about young people's information needs based on their own experiences.
Once we have created the information materials (according to young people's stated preferences) we will invite all the participants in the research young people, parents, and health professionals and researchers to give feedback. We will ask them to assess the efficacy of the information materials and we will use their feedback to develop a set of recommendations to those conducting research in the future.
We are working closely with young people, patients and public groups throughout the project. We want to ensure that their views on how the project should be carried out are incorporated at every stage of the design.
The project is supported by a Manchester Biomedical Research Centre Research Training Fellowship. It is being undertaken by Alisha Gibson.
