Supporting Children and Parents’ Meaningful Engagement with Health Data in Asthma and Cystic Fibrosis Care
With advancements in consumer health informatics solutions, such as mobile apps, sensors embedded into medication inhalers, and wearable devices for assessing physiological measures, health data can now be automatically collected, integrated, and shared for children and parents to manage children’s medical condition in everyday life.
A recent systematic literature review paper highlighted that past HCI (Human-computer Interaction) research has predominantly studied the datafication of children’s wellness (e.g., physical activity, sleep), and fewer efforts have been made to study and design for children with medical conditions. Most knowledge about children tracking of medical conditions is developed in the context of type one diabetes. This suggests future HCI research should consider study and design for children with medical conditions (beyond type one diabetes), as they may share different practices and needs and have more barriers and urgency to health tracking.
We aim to investigate children’s and parents’ caring and data practices and needs in the contexts of pediatric asthma and cystic fibrosis – two medical conditions that requires close data monitoring and health tracking. Based on children’s and parents’ experience with care and data, we aim to co-envision future data-driven technology to support pediatric asthma and cystic fibrosis care.