Balancing Caregiver and Clinician Needs in a Mobile Health Informatics Tool for Preterm Infants

Abstract

Abstract-Preterm infants have significantly higher rates of functional limitations and are at risk for delays in cognitive, motor, and other skills. Through high-risk infant follow-up (HRIF) programs and other early detection methods, these delays and complications can be reduced. However, these interventions require substantial resources and can create extra burden on families. In this paper, we present the results of a qualitative design study to understand the needs of these families and their professional caregivers. These results reveal diverse challenges facing parents and clinicians attempting to document, understand, and share infant health data that must be balanced in any pervasive health solution. In particular, parents described struggling with when to collect data, while clinicians reported being more concerned about what and how parents track infant health. Based on these results, we present five design implications for applications for preterm infant care, which we incorporated into the design of Estrellita, a mobile health informatics tool to support caregivers of preterm infants.

Understanding the conflicting demands of family caregivers caring for depressed family members

“…Taking a broader look at other healthcare technologies, we can also find examples designed for caregivers. For example, systems and devices are being developed to enable caregivers to monitor patient activities from distant locations [16,35] and to have better coordination with other caregivers [8,39]. However, these technologies are not designed to improve the well-being of caregivers but to advance patient care.…”

“…However, these technologies are not designed to improve the well-being of caregivers but to advance patient care. Even though these technologies may help caregivers efficiently carry out caregiving for their patients, we must keep in mind that they also risk placing extra demands on them [39].…”

Providing Adaptive Health Updates Across the Personal Social Network

“…Their experiences were quite different to those of parents of well babies and could be difficult for other parents to understand. Even when babies had been discharged from the NNU, these parents could still experience very high levels of stress, which did not always diminish over time due to the continuing health issues and developmental hurdles that many of the babies faced (Tang et al, 2012). However, even NNU parents are a heterogeneous group.…”

“…Two recent studies-which considered the design of mobile applications to support parents after their babies were discharged from the NNU-conducted phone or face-to-face interviews with parents postdischarge. One involved 17 parents whose babies had been discharged on average 8 months previously (Tang, Hirano, Cheng, & Hayes, 2012); the other involved four parents whose babies had been ''recently discharged'' (Lee, Garfield, Massey, Chaysinh, & Hassan, 2011). Besides our own work, we are aware of only two technology studies that have involved parents whose babies were in the NNU at the time of participation: One involved interviews with nine parents (Mahamood, Reiter, & Mellish, 2008) and the other an evaluation with 56 parents (J. E. Gray et al, 2000).…”

Consumer engagement in health technologies special interest group

“…Numerous websites and smartphone applications allow patients to record, store, and access a variety of health and wellness indicators e.g., [1,3,5,8,11]. In addition, patient portals in electronic medical record systems, as well as personal health record systems, empower consumers by providing them greater access to their health information [7,10,12].…”