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Background: Pediatric palliative care (PPC) is characterized by years of multisectoral and multi-professional care. Sharing information between PPC professionals is, therefore, essential for quality care. The evidence shows that electronic cross-facility health records (ECHRs) provide useful support in this context. To our knowledge, no ECHRs have been developed through a user-centered approach for this specific setting in Germany. Methods: Guided by design thinking, first, qualitative interviews were conducted to assess the needs of PPC professionals. Second, the elicited needs were specified in focus groups (FGs). Based on the needs stated in the interviews, prototypes of the ECHR were developed and discussed in the FGs. The indicated needs were supplemented and specified in an iterative process. The prototypes were further adapted according to these results. The unified theory of acceptance and use of technology was the basic model in the evaluation of needs. Results: Across seven main categories, past and current medication, emergency view, and messaging functions were identified as the participants’ desired core components of an ECHR. Utilizing design thinking facilitated the explicit articulation of user needs. Conclusions: Developing an ECHR with the content identified would allow for real-time data during emergencies, tracking what other PPC professionals have done, and making the applied treatments visible to others. This would offer a broader picture of the complex conditions common to PPC.
IntroductionAssessment of challenging behaviors in dementia is important for intervention selection. Here, we describe the technical and experimental setup and the feasibility of long-term multidimensional behavior assessment of people with dementia living in nursing homes.MethodsWe conducted 4 weeks of multimodal sensor assessment together with real-time observation of 17 residents with moderate to very severe dementia in two nursing care units. Nursing staff received extensive training on device handling and measurement procedures. Behavior of a subsample of eight participants was further recorded by videotaping during 4 weeks during day hours. Sensors were mounted on the participants' wrist and ankle and measured motion, rotation, as well as surrounding loudness level, light level, and air pressure.ResultsParticipants were in moderate to severe stages of dementia. Almost 100% of participants exhibited relevant levels of challenging behaviors. Automated quality control detected 155 potential issues. But only 11% of the recordings have been influenced by noncompliance of the participants. Qualitative debriefing of staff members suggested that implementation of the technology and observation platform in the routine procedures of the nursing home units was feasible and identified a range of user- and hardware-related implementation and handling challenges.DiscussionOur results indicate that high-quality behavior data from real-world environments can be made available for the development of intelligent assistive systems and that the problem of noncompliance seems to be manageable. Currently, we train machine-learning algorithms to detect episodes of challenging behaviors in the recorded sensor data.