Developing an app for children and young people self-managing CKD
Research type
Research Study
Full title
Children and young people with CKD: a qualitative study of their views on desirable components for a developmentally appropriate, CKD-specific information and support software application
IRAS ID
198529
Contact name
Veronica Swallow
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
0 years, 7 months, 1 days
Research summary
We aim to improve the way 5-18 year olds are supported to understand about and live with chronic kidney disease (CKD). In our previous NIHR-funded research in Manchester children’s kidney unit we developed and tested with families a prototype, online parent information and support (OPIS) software application which combines interactive information on managing and living with CKD, with online peer-support. OPIS is now part of standard practice in Manchester. In that research, children and young people also requested a specific child/young person-focussed application, but little is known about what they would like it to contain and we did not have research funds to find this out. Building on the OPIS study we therefore plan a future, national study to refine the parent prototype, develop a child/young person-friendly prototype and combine the two into an online family information and support (OFIS) application for testing and possible future use in all UK children’s kidney units.
However, before applying for funding for the future study we need to find out what 5-18 year olds want in a web-application and what would help or hinder their use of the application. The research we propose here will be carried out in Leeds and Great Ormond Street Children’s Hospitals and the University of Leeds, and be led by an experienced multidisciplinary team of researchers/clinicians and family members who have successfully worked together before. Using a combination of age/developmentally appropriate qualitative individual or group interviews we will consult with children, young people, parents and professionals about the content and format of the child/young person-friendly application. The findings will complete our initial work and help us develop a future grant application for a full trial to create/test OFIS in the 13 UK children’s kidney units.
REC name
North West - Preston Research Ethics Committee
REC reference
16/NW/0227
Date of REC Opinion
21 Mar 2016
REC opinion
Favourable Opinion