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.
Most social media platforms are persistent in nature, enabling users to re-visit content at their discretion. Platforms with design features that support ephemeral communications, such as Snapchat, have become increasingly popular. During the course of our empirical study, we interviewed 15 Snapchat users about their experiences and practices. Our data reveal that Snapchat users experienced different types of loss, including media, meaning, and context loss, and developed workarounds to deal with those losses, including preemptive action and collaborative saving practices. Our findings revealed a conflict between the user's expectation of the affordance the ephemeral platforms would provide, and the actions user's followed.
Researchers and designers find it challenging to use traditional methods to establish cognitive and affective empathy with persons with dementia (PWD) and informal caregivers of PWD (CPWD). We used participatory design (PD) to learn about and design for the experiences of PWD and CPWD. Here, we present our experience applying PD in a design project with PWD and another with CPWD. We discuss challenges we faced regarding choice of method, relationship with project partners, and working with an older, cognitively impaired population. Finally, we describe lessons learned using PD methods with PWD and CPWD. 1
Persons with dementia (PWD) benefit from participating in meaningful activities. This study’s objective was to learn the characteristics of successful meaningful activities from community-based service providers who work with PWD. Six group interviews were performed with 15 unique professionals from an adult day service or community-based coordinated care program. These were supplemented by 100 hr of researcher immersion through weekly volunteering. Data were analyzed by a team, using qualitative content analysis. Participants reported successful activity content incorporated personalization; continuity and incremental challenges; and social engagement. Successful delivery of activities required managing necessary resources; involving informal (family/friend) caregivers; having a backup plan; monitoring time of day and energy levels; facilitating a domino effect; and ensuring safety. Outcomes of successful activities were experiencing fulfillment and purpose; overcoming challenges; and unexpected triggers. Research and practice recommendations include testing innovative, dynamic, and technology-enabled approaches to providing such activities.
Nos últimos anos, em vários países, os desastres naturais de origem climáticatêm ocupado a atenção de pesquisadores, organizações governamentais enão-governamentais e os meios de comunicação. No Distrito Federal não édiferente. A cidade de Brasília, mesmo com status de capital do Brasil, juntamentecom as demais Regiões Administrativas que compõem o Distrito Federalvem apresentando, já há alguns anos, inúmeros casos de desastres naturaisde origem climática que têm afetado diretamente a população. No mêsde outubro de 2006 foram totalizados na estação do INMET 526,4 mm dechuva, o que corresponde a 205% a mais que a Normal Climatológica domês. Esse trabalho teve como objetivo principal analisar, sob uma perspectivageográfica, os sistemas atmosféricos geradores de eventos extremos deprecipitação que atuaram no mês de outubro de 2006 e os impactos pluviaisdecorrentes desses eventos no Distrito Federal. Observou-se que os temporaisque causaram inúmeros desastres na região foram provocados pelo encontroda umidade proveniente da Amazônia com frentes frias do Sudesteque promoveram a formação de inúmeras áreas de instabilidade. Contudo,não se pode delegar somente à chuva a origem dos desastres registrados duranteo mês. A intensa urbanização também contribui para os impactos pluviaisobservados.
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