Minority report on mobile health technologies

Background

This study explores how mobile health smartphone applications (mHealth apps) are designed and attuned to children and young people that live with chronic illness. mHealth apps make it possible for patients to monitor their illness continuously in everyday life, and is predicted to be valuable for increasing patients’ illness self-management, direct healthcare services towards the individual patient’s needs, and to improve health outcomes. Yet the evidence for mHealth apps’ abilities to integrate into the lives of paediatric patients and improve illness management and health outcomes is mixed. This study aims to investigate how mHealth design processes consider the particular circumstances of children and young people and their everyday lives with chronic illness.

Project objective

To investigate the attuning of mHealth apps to children and young people that live with chronic illness, a multi-method ethnographic fieldwork was conducted across the site of children and young people diagnosed with either haemophilia of juvenile idiopathic arthritis and the site of two mHealth design projects targeting these two patient groups. The generated empirical material covered written fieldnotes and photographs of children’s and young people’s everyday life with chronic illness and transcripts of focus group discussions among children and young people, parents, and a hospital youth panel. Furthermore, it included transcripts of interviews, fieldnotes, photographs, and a variety of collected materials with the mHealth projects. The empirical material was analysed through thematic network analysis to determine themes of the individual sites of children and young people living with chronic illness and the mHealth design projects and also enable analysis across them.

Results

The key finding of the study was that there are various troubles in attuning mHealth apps to the particular circumstances that characterise children and young people and their ways of living with chronic illness. The results showed considerable discrepancies between how the mHealth projects purposed their designs and the ways in which children and young people practice and perceive their lives with chronic illness. It furthermore showed that the mHealth projects’ design methods gradually limited the projects’ capabilities to account for children and young people as a particular kind of user until excluding them as target users entirely in favour of an adult patient group. The mHealth projects’ challenges in recognising and adjusting to the lived realities of children and young people were associated with larger structural and visionary ideas about patients’ abilities to manage and live with chronic illness.

The results suggest that mHealth innovation can marginalise children and young people that live with a chronic condition because the design processes are firmly anchored with patient ideals, design methods, and purposing that is exceedingly connected with adult patient populations. mHealth innovation can thus come to imply embedded ‘adult defaults’ that considerably troubles the attuning of the technological designs to children and young people.  On this basis, mHealth projects should be attentive to the driving forces of the innovation context that they are part of which might bias the design towards some groups and against others. Furthermore, the field of mHealth innovation should seek out opportunities for enabling explorations of children and young people’s lived realities and specific societal positions to inform the digital health design processes.

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