Apps for adolescents 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

Description

Aims

• To determine what young people aged 10-18 with CRD want in a mobile health app to promote and support self-management skills and knowledge.
• To determine what parents and health professionals think is important in a mobile health app to promote and support young people’s self-management skills and knowledge
• To complete the final stage in a stepped pilot and inform the next step in our phased approach (identifying/developing theory and modelling the process) to designing, developing and undertaking a feasibility RCT of a prototype app. that addresses the identified needs and preferences of young people with CRD, parents and professionals.

Abstract

Background: There is growing evidence that supporting self-management of Juvenile Arthritis can benefit both patients and professionals. Young people with Juvenile Arthritis and their healthy peers increasingly use mobile technologies to access information and support in day-to-day life. Therefore, a user-led, rigorously developed and evaluated mobile app could be valuable for facilitating young people’s self-management of Juvenile Arthritis.

Objective

The objective of this study was to seek the views of young people with Juvenile Arthritis, their parents or carers, and health care professionals (HCPs) as to what should be included in a mobile app to facilitate young people’s self-management of chronic rheumatic disease.

Methods: A qualitative approach was adopted with a purposeful sample of 9 young people aged 10-18 years with Juvenile Arthritis, 8 parents or carers, and 8 HCPs involved in their care. Data were gathered through semi-structured focus group and individual interviews with young people and their parents or carers and HCPs. Interview discussion was facilitated through demonstration of four existing health apps to explore participants’ views on strengths and limitations of these, barriers and facilitators to mobile app use, preferred designs, functionality, levels of interaction, and data sharing arrangements. Data were analyzed using the framework approach.

Results: Analysis revealed three interlinked, overarching themes: (1) purpose, (2) components and content,  and (3) social support. Despite some differences in emphasis on essential content, general agreement was found between young people with Juvenile Arthritis their parents or carers, and professionals that a mobile app to aid self-management would be useful. Underpinning the themes was a prerequisite that young people are enabled to feel a sense of ownership and control of the app, and that it be an interactive, engaging resource that offers developmentally appropriate information and reminders, as well as enabling them to monitor their symptoms and access social support.

Conclusions: Findings justify and pave the way for a future feasibility study into the production and preliminary testing of such an app. This would consider issues such as compatibility with existing technologies, costs, age, and cross-gender appeal as well as resource implications.

People

Jenny Waite-Jones  (Co-PI), Veronica Swallow  (Co-PI), Mark Wood, Vanessa Van Rooyen, Janet McDonagh, Rabiya Majeed-Ariss, Joanna Smith, Ruth Nightingdale, Collette McColgan, Simon Stones, Sally Vincent, Andrew Hall

Funding body: School of Healthcare Research Pump Priming Fund £650

Contact: Dr Jenny Waite-Jones