More than 30 million Americans provide unpaid care for a loved one as a caregiver. Regardless of whether they have any prior experience in caregiving, family caregivers are expected to provide around-the-clock care for their spouses, children, and/or parents. The management of serious chronic illnesses, such as blood disorders, involves more complex roles for caregivers; these include coordinating clinic visits, providing emotional support, and performing self-care activities. Many caregivers must defer not only their personal lives, but their employment; this often results in a marked decline in physical and mental wellness throughout the long-term care period. Despite the challenges they experience, caregivers rarely receive adequate aid. They are considered an “invisible workforce” because the healthcare system typically prioritizes patients’ health; as a result, support programs are limited.
Assistant Professor Ji Youn Shin (Product Design), Associate Professor Lana Yarosh (Computer Science and Engineering; MSI PI), and Dr. Amanda Johnson (Pediatrics) are working on a project called “Long-term care starts on Day One: Supporting family caregivers through asset-based technology design,” that builds on previous studies that showed opportunities for supporting family caregivers’ through sociotechnical systems. They will work with Fairview clinicians and caregivers of patients undergoing hematopoietic stem cell transplantation (also called blood and marrow transplantation, or BMT), a treatment for blood diseases such as leukemia, lymphoma, and sickle-cell disease, as well as for certain immunodeficiencies.
The goal of the study is to apply asset-based approaches and develop sociotechnical systems that can support family caregivers of chronic conditions in managing their wellness throughout the care process. The one-year study consists of two phases: (1) semi-structured interviews and co-design through Design probes, and (2) prototype development and pilot user tests.
The contribution to current human-computer interaction and design research is threefold:
- This research will provide empirical understanding of how family caregivers contextualize and situate themselves into the patient’s treatment process.
- This study will propose Design probes as co-design methods when drawing experiential knowledge, assets, and strengths from user groups thathave previously been less visible, including family caregivers.
- This study will broaden the scope of long-term caregiving support technologies to include starting at the beginning of the hospitalization period, so that family caregivers can be better prepared for what is to come.
This project recently received a Research Computing Seed Grant. RC Seed Grant funds are intended to promote, catalyze, accelerate and advance U of M-based informatics research in areas related to the MnDRIVE initiative, so that U of M faculty and staff are well prepared to compete for longer term external funding opportunities. This Seed Grant falls under the Robotics and Cancer Clinical Trials research areas of the MnDRIVE initiative.
The RC Seed Grant programs are currently being revised. Information about the updated programs will be posted on the Research Computing website shortly.