Advisor: Amy Csizmar Dalal
During the last few years of his life, my dad lived with several chronic illnesses: Parkinson's disease, for about a decade, and more recently, brain cancer and seizures. My mom, who also lives with her own chronic illness, was my dad's primary caretaker during this time. Caring for my dad with his complex treatments and therapies became a 24/7 job for my mom: juggling the dozens of medications he had to take every day, along with doctor's appointments, MRIs and other scans, occupational therapies, support groups, three insurance programs, and two medical tracks (my dad was a vet, so some treatment and therapies happened through the VA and some happened through the mainstream medical establishment).
My mom had a complex system of notebooks, calendars, and taped-up reminders around the house in order to keep track of things, but invariably things would fall through the cracks, often with dire consequences. (For instance, some Parkinson's medications need to be taken on a strict schedule. Failure to take them on schedule often led to periods of profound confusion for my dad and a sleepless night for my mom.) And when two doctors disagreed on a key diagnosis for my dad, it was hard for my mom to keep track of which doctor said what, negotiate between the two doctors, and relay the correct information about the diagnoses to other family members.
This scenario is all too typical these days. Our population is aging: In 2012, 13.7% of the US population was 65 years of age or older, and this number is projected to jump to 21% of the population by 2040. Life expectancies have also risen: someone who turns 65 this year is likely to live another 20 years. In 2012, 36% of people over the age of 65 reported having some type of disability, and most older adults in the US live with at least one chronic medical condition (arthritis, diabetes, etc). Family members---spouses, children, relatives---often take on the role of primary caregiver for this population. Most such caregivers have other family responsibilities and jobs, and are not health professionals.
Often caregivers lack a central, organized system in which to keep track of the treatment of their loved ones. Providing caregivers with more effective ways to gain control of all the various pieces of caring for a loved one is a big challenge and an as-yet unfilled need within the world of apps. This project aims to fill that need.
In this project, you will develop a general-purpose app to help caregivers better manage the care of chronic illnesses. The goals of this project are as follows:
We likely will have a community partner in place by the start of this project, so you will also be working with an actual client on this project.
At a minimum, you will develop a high-fidelity prototype of an app or website that demonstrates an understanding of your target audience and their goals. Once this goal is accomplished, and as time permits, you will add functionality to the app, with the ultimate goal of a fully-functional, fully-integrated, releasable app.
Software design is the main prerequisite for this project. It's helpful, but not necessary, if you've taken either Human-Computer Interaction or Mobile Application Development, or have some psychology or cognitive science background. If you are interested in healthcare in general, that is also a plus (but not necessary) for this project. A desire to engage with the community of caregivers, to delve into a problem from both the technical perspective and the human perspective, and to explore computing for the greater good, is highly recommended!
Below are examples of more recent work in the general field of computer-supported cooperative work (CSCW) as it relates to caregivers---that is, research on caregivers from an HCI angle. Note that we will also be delving into the medical literature, as there have been a number of longitudinal studies on caregivers.