In spring 2017, Nicole Werner, an assistant professor of industrial and systems engineering at the University of Wisconsin-Madison, received a $175,000 grant from the National Science Foundation titled “Innovating consumer health information technology designs for informal caregiving: From individual caregivers to loosely coupled informal teams.” In this two-year project, Werner and PhD students Dustin Weiler and Siddarth Ponnala will create a web-based platform as a much-needed home caregiving resource for family members and friends who care for vulnerable patients with chronic health conditions. It will allow caregivers to connect around the care of an individual patient and support each other, both in-person and online.
Compared to professional care teams at hospitals and other healthcare facilities, much less is known about how loosely structured home caregiving teams communicate and share information. Therefore, the researchers will develop a prototype of the web-based platform by observing and interviewing caregivers in the homes of Alzheimer’s disease patients. Working with partners at the Wisconsin Alzheimer’s Disease Research Center and the William S. Middleton Memorial Veterans Hospital in Madison, they will recruit 20 patients with Alzheimer’s disease or related dementias and several members of their in-home caregiving teams.
Guided by existing human factors engineering models, the researchers will analyze the patterns of communication and information management they observe in the home caregiving setting. From this analysis, they will develop a support technology prototype and present it to focus groups, including both home-based and professional caregivers, to solicit suggestions for improvement. Their ultimate goal is to produce a customizable interface that connects a network of caregivers, reduces the stress and burden they experience and improves the quality of care for the patient.
The project’s findings will be shared in-person with local caregiver support groups and senior centers, and will also be broadly disseminated through a public blog. Werner says this project is a first step in a larger research effort that will apply to many different health conditions and has the potential to transform the in-home caregiving experience from a highly-burdened individual to a connected and supported network.