Living Ambivalently with Chronic Illness.

Mobile health smartphone applications (mHealth apps) enable patients to monitor how chronic illness interconnects with their everyday life. I explore, through focus group discussions, how such monitoring makes sense to pediatric and young patients and parents in Denmark. These groups explicate how they live both with and without chronic illness by distinguishing between when to focus on which aspects of it. I argue that this relationship with chronic illness produces parent's, children's, and young people's ambivalent attitudes toward mHealth apps that promote illness monitoring "anywhere" and at "any time."

Critical user-configurations in mHealth design: How mHealth-app design practices come to bias design against chronically ill children and young people as mHealth users.

Mobile health smartphone applications (mHealth-apps) are increasingly emerging to assist children's and young people's management of chronic conditions. However, difficulties persist in applying design approaches in mHealth projects that return apps that are useful to this group. In this article, we explore ethnographically two self-proclaimed 'user-driven' projects designing mHealth apps for Danish patients below the age of 18 living with, respectively, haemophilia and rheumatoid arthritis. These projects initially included the perspectives of children and young people to inform the designs, however, eventually launched the final apps for adult patients only. Through a concept of 'critical user-configuration', we examine the projects' challenges with attuning the designs to children and young people and how these drove their exclusion as users of the emerging mHealth apps. Critical user-configuration draws attention to critical moments in design practices where significant shifts in user-configurations take place, shaping who can become a user. More specifically, we uncover three critical moments: where mHealth projects expand the group of prospective users; where test subjects are selected; and where data governance systems and digital health infrastructures are mobilised in the design process. Throughout these critical moments, there is a drift from user-driven to data-driven design approaches which increasingly exclude groups of users who are less datafiable - in our case children and young people. We argue that besides giving voice to minors in mHealth design processes, we need to be mindful of the design practices that become decisive for - often implicitly - who can be configured as a user.