TABLE 4.

Themes From Narrative Evaluation During Usability Testing

	Example Quote
Benefits of the app
Gives parents flexibility to manage time and cares	“We’ve never been apart from her for more than 12 hours in 16 years.… The knowledge that—and ability to get feedback on—she was seeing all her tasks met would be really helpful and make us feel a whole lot better.”
Provides confidence and peace of mind	“You don’t always teach people the one-off scenarios. So being able to have that already in there for [other caregivers] to feel confident to do it and us having the peace of mind.”
Simplifies life and reduces error	“It’s a one-stop…one area where they can have all this information…and that can make life simpler and cut down on human errors—between caregivers and spouses.”
Supports the child as a person and not just a diagnosis	“I love the ‘best way to communicate with me, comfort measures’…I like the humanity in ‘I am calmed by, I am upset by.’ This is a person, an individual, not a diagnosis, not a disability.”
Areas for app refinement
Customizing the tracking and reporting of relevant health information	“See some longitudinal data, graphing…what was her calorie intake over the last 2 weeks.… Being able to do some quick-view reporting or some sort of reporting function.”
Organizing and editing notes	“If you’re starting to write a note, and then you get sidetracked, and then it gets submitted but it actually didn’t happen. That would be nice to be able to go back.”
Personalizing information in the child profile	“I would put emergency protocol…or heads up about my [child’s conditions].… So you probably want that in there somewhere.”
Including an area highlighting resources for family caregivers	“If my kid’s [device] is wonky, who could they call.… What’s community resources, what’s out there in the world…even if you could put down [that] these people have resources for you.”