Health information management practices in informal caregiving: An artifacts analysis and implications for IT design

Abstract

Introduction: Unpaid informal caregivers of adult care recipients, including persons with dementia, experience multiple unmet information needs and information management challenges. Objectives: To understand the current personal health information management (PHIM) practices in informal caregiving for adults with and without dementia. Methods: Semi-structured interviews were performed with ten informal caregivers-half of whom were caring for persons with dementia-and four formal caregivers at an adult day service. Interviews centered on a paper-based tool distributed by the day service, the CARE Kit, permitting an artifacts analysis of the tools used by participants for PHIM. Qualitative thematic analysis was applied to interview data. Results: Caregivers' PHIM practices aimed to support daily care management and decisionmaking on behalf of care recipients, through: 1) information acquisition and integration across multiple sources and records; 2) information maintenance, updating, and use over time; and 3) information sharing and communication with healthcare professionals and other family caregivers. Participants reported advantages and challenges of their PHIM practices and tools, including fitting PHIM into their daily lives, managing PHIM-related cognitive workload, the functionality of PHIM tools, and the dynamic, longitudinal nature of PHIM. Conclusion: The study produced a number of implications for caregiver health information management information technology (CHIM IT), based on findings about the nature of caregivers' practices for managing information for adult care recipients. We present CHIM IT requirements related to privacy and security, customization and flexibility, ease of use, credibility and sensitivity, situation awareness, information integration, delegation and shared use, updating and maintenance, archiving and versioning, communication, agency and information access, and validation.

The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study

“…Participants still felt that there were time constraints and reported technological issues as barriers to effectively using the PHR-ADRD system. These findings align with a recent study that identified several ways in which another similar internet-based medical management tool was perceived as difficult to use: caregivers were reluctant to add another management tool to their already busy day-to-day activities, found the system itself difficult to use in terms of cognitive workload, and reported the system’s tools to be of limited dynamic functioning [ 57 ]. Although this study’s participants did not feel particularly lost using the PHR site, systems designed for ADRD caregivers need to pay extra attention to user interface design to equitably reduce cognitive and time burdens for users from all technological backgrounds [ 58 ].…”

Challenges and Recommendations for the Deployment of Information and Communication Technology Solutions for Informal Caregivers: Scoping Review

“…Technology solutions are not optimized to specific informal caregiver needs as it could be hard to recognize themselves in the information provided through ICT [ 26 ]. The content delivered via ICT solutions is often static and not specific to caregiving needs [ 34 , 41 ]. The literature reported that the experience of seeking information about caregiving situations using ICT solutions appeared to be a chaotic and confusing process, as informal caregivers need to access multiple information routes to get the information they need [ 34 , 37 , 38 , 55 ].…”

“…The literature reported that the experience of seeking information about caregiving situations using ICT solutions appeared to be a chaotic and confusing process, as informal caregivers need to access multiple information routes to get the information they need [ 34 , 37 , 38 , 55 ]. In many studies, informal caregivers reported difficulties in finding specific and up-to-date information related to their caregiving situation which adapts to changing needs over time [ 41 , 48 , 55 ].…”

“…Some informal caregivers don’t feel confident about the information provided via ICT solutions [ 41 , 55 ]. Informal caregivers reported their concerns about the quality of the content presented via ICT solution [ 33 , 34 , 51 ].…”

Recent advances of HCI in decision-making tasks for optimized clinical workflows and precision medicine

“…In [44] an algorithm, called Sequential Risk Sampling (SeqRTS), was developed to distribute notifications in a uniform way across all risk times. With reference to homecare, the work in [45] addressed the Personal Health Information Management (PHIM) practices, by sharing the information with the medical staff, in informal care-giving for patients with/without dementia.…”