The 'My Life' project: Growing up and living with ataxia-telangiectasia (A-T)
Ataxia-telangiectasia (A-T) is a very rare, complex, progressive genetic condition which affects physical coordination and control. The A-T Society is concerned that current understandings of young people’s lives are primarily based on parents’ accounts. They commissioned this project in order to hear directly from young people about their experiences of growing up and living with A-T.
SPRU research team
- Bryony Beresford
- Nicola Moran
- Susan Clarke
Related links
Publications and presentations from the project are available from the York Research Database
Project summary
Ataxia-telangiectasia (A-T) is a very rare, complex, progressive genetic condition which affects physical coordination and control. An increased vulnerability to ill-health and some cancers may also occur. The A-T Society is a third sector organisation providing support to people with A-T and their families and promoting research on this condition.
The A-T Society is concerned that current understandings of young people’s lives are primarily based on parents’ accounts. They commissioned this project in order to hear directly from young people about their experiences of growing up and living with A-T. The A-T Society wants to use the evidence generated by the study to inform future strategies and work of the A-T Society.
The main source of data for this project were interviews with young people. However, A-T Society staff and a small number of parents were also interviewed.
Additional information
Related links
Publications and presentations from the project are available from the York Research Database