Andrew Miller receives NSF grant to study caregiving for young cancer patients
June 25, 2019
Andrew Miller, Ph.D., assistant professor of human-computer interaction (HCI) in the Department of Human-Centered Computing has received a two-year NSF CRII Smart and Connected Health Award of $174,791. He is principal investigator on the project entitled “Parent-2-Parent: Supporting Dyadic Caregiving in the Hospital” and will be collaborating with Dr. Emily Mueller of Riley Children’s Hospital, Pediatric Hematology/Oncology department.
In this study, Miller will identify and demonstrate how social technologies can help parents to more effectively communicate and coordinate with each other during the hospitalization of their child. Miller will study these issues with families facing pediatric cancer, the leading cause of disease-related deaths in youth.
Miller’s study addresses two specific aims. First, Miller will characterize how parents currently communicate and coordinate with each other using current technology. Then, in collaboration with parents themselves, Miller will envision, demonstrate, and verify technologies to support them in new ways. To accomplish these aims, Miller and his team—in collaboration with Dr. Mueller—will conduct qualitative interviews, develop themes, and check these findings using broad surveys. Then Miller plans to build tools—in collaboration with parents—and test them in real-world settings.
When facing a health crisis such as a cancer diagnosis, parents must adopt new roles and responsibilities in addition to their parenting and spousal roles, which can lead to stress and potential mistakes. Miller says that patient safety is a “swiss cheese model” where errors can line up, and parents often feel they are the last line of defense. “This grant is a participatory design project with parents, in which we are asking ‘How can communication tech support the parenting/family caregiving model in these extraordinary circumstances?,’” he says. In the past, social computing research on these issues has been informed by office practices, which is a less intense environment.
“There are many possible barriers to parents’ interaction with each other during a hospitalization, including nursing handoff, timing and time limitations, asymmetry, lack of knowledge, and just staying connected. We want to know are there successful practices out there already, and how can we build on and extend those?”
Miller’s forte is sociotechnical systems, i.e,, the systemic study of people and computing, where individuals or groups in various roles exchange info, learn, and apply care via technology. He says, “Tech facilitates that interaction. Right now (in hospitals) parents provide information primarily through conversation, white boards, and notebooks, and the electronic medical record has been only a partial solution because access alone is not enough. Also, parents as part of the ‘team’ is a new concept and there is still wariness. Pediatrics has been accepting longer with parents as advocates,” Miller adds.
Miller’s work also has implications for dyadic, or paired, caregiving in diverse healthcare contexts. The long-term goal of this project is to establish fundamental design strategies for social computing that enable effective dyadic caregiving coordination in unanticipated, stressful situations, such as the hospitalization of one’s child, and to show how those technologies could support decision-making and information sharing amid high degrees of uncertainty.
This material is based upon work supported by the National Science Foundation under Grant No. 1850273. Any opinions, findings, and conclusions or recommendations expressed in this material are those of the author(s) and do not necessarily reflect the views of the National Science Foundation.