As the number of people living with chronic conditions increases, so does the burden of home caregiving provided by family members and friends. Often, a number of people -- close and distant family, friends and neighbors, clinicians -- act as an informal, loosely structured team of caregivers for a given patient, and though professional care teams in hospitals are well-studied, much less is known about how these loosely structured home caregiving teams communicate and share information in order to provide good care. To build this understanding, and to inform the design of consumer health information technologies that might support these teams, the researchers will observe, interview, and survey caregivers in Alzheimer's Disease patients' homes. Questions will focus on aspects of teamwork including the different roles caregivers play and how they change over time; the tools and methods they use to find, save, and share information; and the ways they make care decisions both as individuals and as groups. Using the data, and starting from existing models of professional caregiving teams and general models of teamwork, the researchers will develop new models of informal teamwork that are grounded in the activities of home caregiving; then, working with caregivers and clinicians, they will develop design requirements and ideas for tools to help caregiving teams address problems identified by the models. These models and design ideas will be a first step in a longer line of research that will apply to many different health conditions, and support caregiving not just in person but online and virtually. The researchers will also work to make their findings widely available, through outreach to caregiver support groups and senior centers and through a public blog that will provide frequent updates on the progress of the research. As part of the work, the lead researcher will train two new PhD students to conduct the interviews, observations, analysis, and design work.
Working with partners at the Wisconsin Alzheimer's Disease Research Center and a local Veteran's Affairs Hospital, the researchers will recruit 20 patients with Alzheimer's Disease or related dementias and several members of each patient's caregiving team, including their primary caregiver. Using a modified critical incident technique, teams of two researchers (one leader, one note-taker) will conduct interviews and surveys at patients' homes both for comfort and to support observation of the caregiving environment, particularly around the identification and discussion of artifacts used by the caregiving team. The analysis of the data will be guided by both the theory of distributed cognition and by two existing models of socio-technical work in healthcare systems, the Systems Engineering Initiative for Patient Safety and the Patient Work System model, using a coding system based on those models but allowing for the identification and inclusion of new themes and codes. These analyses will then be represented using the Epistemic Network Analysis method, which blends elements of social network and discourse analysis, to capture the patterns of communication, information management, and cognitive work that emerge. Design requirements and low-fidelity prototypes will be developed based on the models, then discussed with several focus groups that include both caregivers and experts in caregiving, including geriatricians, nurses, and social workers to identify the potential problems that might be ameliorated (or caused) by the prototype designs.
