Data collection methods with teenagers and young people with cancer
Research type
Research Study
Full title
An exploration of the data collection methods utilised with teenagers and young adults with cancer.
IRAS ID
135911
Contact name
Sarah. M. Flanagan
Contact email
Sponsor organisation
University of Birmingham
Research summary
Each year in the UK, 2,022 people aged 15-24 and 1,578 people aged 0-14 are diagnosed with cancer. Although cancer is a relatively uncommon illness in these age groups, the impact of the disease upon patients, particularly on teenagers and young people can be profound.
We do not know very much about the experiences of being diagnosed with, treated for, and in particular living with relapsed cancer (cancer that has returned following treatment) in teenagers and young adults.
The teenagers and young people (TYAs) will all be current patients at one of The Teenage Cancer Trust (TCT) units in Birmingham. The TCT is a national charity providing specialist treatment and support for young people between the ages of 13-24. The trust has 25 units across England and Scotland, with a further seven in development, housed within NHS hospitals. Traditionally, teenagers and young people have been treated alongside children and older adults on general wards. The physical and emotional changes that take place during adolescence and young adulthood, along with the traumas associated with being diagnosed and treated for cancer, can further impact upon young people, leaving them feeling alone and isolated. TCT aims to empower young people to take control of their lives, and acknowledges that illness is only a part of their lives.
A previous review of the available studies exploring the data collection methods used with teenagers and young people showed that there are a variety of methods available each with their own advantages and disadvantages. The purpose of this study is to find out which data collection methods teenagers and young adults living with cancer favour in terms of recording or communicating the experiences associated with their diagnosis and treatment for cancer. It will use questionnaires for the young people to complete in their own time and an interview, if they are happy to take part in an interview.
It is hoped that once we have collected the information from the TYAs, we will be able to use the kind of methodology that they most prefer to talk about their experiences of living with cancer.
REC name
North of Scotland Research Ethics Committee 2
REC reference
13/NS/0133
Date of REC Opinion
17 Oct 2013
REC opinion
Further Information Favourable Opinion