designing for pediatric adherence and asthma - medicinex 2012 @stanford university - rouja pakiman...

Background Having a child with a chronic condition like asthma is a struggle for any family. Initially, parents feel unsure, overwhelmed and scared. Over time, they express to feel worn out and frustrated. On a daily basis, adhering to the nebulizer treatments is the biggest challenge. Children don’t like the nebulizer treatment and fight it. Parents know how important it is for their child’s health and insist. Children perceive having to sit still and do the nebulizer treatment as punishment, especially while their siblings are free to play. Also, children perceive the 12-minute treatment as much longer. To the surprise of his mother, a five year old boy in Arizona, announces that it takes “an hour and a half”. We believe that design has the power to turn these daily fights into nurturing moments for parents and children to achieve maximum benefits of the nebulizer treatment without putting the relationship at risk. Approach Eight technology-savvy families with at least one child with asthma participated in the qualitative research explorations. All children were between the ages of 5 to 11 and had been diagnosed with asthma at least 3 months prior. Ethnographic research allowed us to gain deep understanding of adherence challenges around nebulizer treatments carried out at home. Remote participants submitted images of in-home treatment and shared their stories about adherence challenges over the phone. Synthesizing the findings into a design framework and design principles inspired the development of prototypes. Children and parents explored the prototypes in multiple iterations and provided feedback for improvements. The interactive storybook reframes the children’s relationships with their breathing mask. Using augmented reality technology, children enter a magical world by putting on the breathing mask. Interacting with the screen wearing the magical mask, the child feels empowered and engaged. Storytelling prompts invite parents to participate. Markers on screen that activate ‘quests’, create a meaningful role for parents to contribute to the storybook. Being part of a treatment session, takes the pressure off parents and puts them on the same team as their child, rather than working against each other. Conclusion Young children rely on their parents to drive adherence. Yet, children have little say and experience current treatments as something that’s being done to them, rather than done together. So their only choice is to throw a fuss and make it difficult for their parents. In response, parents take on authoritative roles which makes them uncomfortable and puts their relationship with their children at risk. The interactive storybook prototype is not the silver bullet for adherence in children with asthma; however, it addresses adherence challenges to the nebulizer treatment turning daily struggles into nurturing moments for parent and child.