Self-Management App for young people with chronic rheumatic disease
Research type
Research Study
Full title
Apps for young people with chronic rheumatic disease (CRD): a qualitative study of young people’s, parents’ and professionals’ views on required components of a mobile health-app to support self-care.
IRAS ID
193786
Contact name
Jennifer M Waite-Jones
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
0 years, 7 months, 30 days
Research summary
The self-management needs of young people with chronic rheumatic disease (CRD) are now better understood. Smartphone applications (apps) have the potential to facilitate self-management. Young people’s desire for such an app was expressed during our prior user led survey but our subsequent systematic literature review found scant evidence of young people’s involvement in their development or effectiveness. This study aims to gather information from young people with CRD, and those involved in their care, about effectiveness of self-help mobile apps and what else could be included. We will seek the opinion of young people on the Leeds Children’s Hospital Rheumatology database, their parents/carers and health professionals. After verbal/written explanation, written consent will be obtained from all participants. Patients under 16 years will sign assent forms with parents/carers signing consent forms on their behalf; those 16+ years will provide written consent.
18-24 young people will form three focus group interviews. Two other focus groups will include 8-10 parents and 8-10 healthcare professionals respectively. We will organize groups at a mutually convenient time. Individual interviews will be arranged in the event of any unforeseen changes. Where extra travel is incurred for participating families, their costs will be reimbursed. We will use age and developmentally appropriate, technology-supported methods to explore views on the strengths/limitations of existing mobile apps to facilitate discussion on potential barriers and facilitators to their use, preferred designs, functionality, levels of interaction and data sharing arrangements. Interviews will be digitally recorded and transcribed.
Framework analysis will be used as this leaves an audit trail to ensure confidence that findings are based only on the data. Findings will be reported and outputs developed, on which to undertake future app development and a feasibility randomised controlled trial (RCT). Our design and methods could also be transferred to other contexts and conditions.
REC name
North West - Greater Manchester South Research Ethics Committee
REC reference
16/NW/0211
Date of REC Opinion
21 Mar 2016
REC opinion
Favourable Opinion