Original Paper

Background: When caring for a family member who suffers a brain injury, family members often need to share the care. While the family is learning to cope with the injury, each member must rearrange his or her own schedule as well. We envision a computer system that can aid in this transition period, and continue to support family members in managing care amongst themselves in the years to come. Designing a computer system for use in the context of healthcare requires knowledge from the health and computer science fields. Objective: This paper describes our experiences of integrating the knowledge in both fields to design and evaluate a digital knowledge medium that aims to ameliorate the burden of managing care schedules for families with a member who has brain injury. A digital knowledge medium is an electronic device that supports thought, coordination, and planning. Method: Computer system interface and system design involve iterative design to ensure that the device supports the user. Because caregivers are stressed mentally, physically, and financially, it is paramount that design choices are well-executed. This paper illustrates the strong need for lockstep design, where each design choice is validated with the family and specifically targeted for their circumstances. The design progressed in three stages. First, we conducted needs assessments with three families using stakeholder interviews, artifact assessment, and environment assessment. Second, the needs assessment data were analyzed using stakeholder, artifact, task, scenarios and requirement analysis techniques. We used the analysis results to develop a design concept. Finally, two caregivers and two case managers validated the design concept in interviews. They performed representative tasks using two prototypes. Their performance and difficulties with the tasks were observed. Results: The results showed that primary caregivers who were busy had to perform complex tasks to schedule and coordinate helpers. The nature of coordination and the network of helpers frequently changed. The results surprised us with new user needs. In the artifact analysis, we learned the importance of translating traditional artifacts like calendar and white board into the new digital counterparts: caregivers thought the new design useful and easy to use because familiar metaphors were chosen. In the usability study, we learned why caregivers had difficulties using some functions by carefully examining conceptual similarities and differences between the designers and caregivers. We added three new functions to enhance the design. The validation study showed that the new design was perceived as useful, easy to use and consisted of important functions. Conclusions: Our experience shows that eHealth technologies can be integrated into the caregiving cycle through user-centered design techniques. This project also demonstrates how a collaborative study can promote cross-germination of design and evaluation methodologies between the fields of human-computer interaction and occupational therapy.