Hoosier Sport: a research protocol for a multilevel physical activity-based intervention in rural Indiana.

Introduction: Currently, only 1 in 4 children in the U.S. engage in the recommended amount of physical activity (PA) and disparities in PA participation increase as income inequities increase. Moreover, leading health organizations have identified rural health as a critical area of need for programming, research, and policy. Thus, there is a critical need for the development and testing of evidence-based PA interventions that have the potential to be scalable to improve health disparities in children from under-resourced rural backgrounds. As such, the present study utilizes human-centered design, a technique that puts community stakeholders at the center of the intervention development process, to increase our specific understanding about how the PA-based needs of children from rural communities manifest themselves in context, at the level of detail needed to make intervention design decisions. The present study connects the first two stages of the NIH Stage Model for Behavioral Intervention Development with a promising conceptual foundation and potentially sustainable college student mentor implementation strategy. Methods: We will conduct a three-phase study utilizing human-centered community-based participatory research (CBPR) in three aims: (Aim 1) conduct a CBPR needs assessment with middle school students, parents, and teachers/administrators to identify perceptions, attributes, barriers, and facilitators of PA that are responsive to the community context and preferences; (Aim 2) co-design with children and adults to develop a prototype multi-level PA intervention protocol called Hoosier Sport; (Aim 3) assess Hoosier Sport's trial- and intervention-related feasibility indicators. The conceptual foundation of this study is built on three complementary theoretical elements: (1) Basic Psychological Needs mini-theory within Self-Determination Theory; (2) the Biopsychosocial Model; and (3) the multilevel Research Framework from the National Institute on Minority Health and Health Disparities. Discussion: Our CBPR protocol takes a human-centered approach to integrating the first two stages of the NIH Stage Model with a potentially sustainable college student mentor implementation strategy. This multidisciplinary approach can be used by researchers pursuing multilevel PA-based intervention development for children.

Co-Design of a Financial and Legal Planning Tool for Care Partners of People Living With Alzheimer's Disease and Related Dementias.

Background and Objectives: Care partners of people living with Alzheimer's disease and related dementias (ADRD) are faced with substantial legal and financial planning related to their care partner role. However, many care partners lack the legal and financial support needed to manage this role. The purpose of this study was to engage ADRD care partners in a remote participatory design process to create a technology-based financial and legal planning tool that meets care partner needs. Research Design and Methods: We formed 2 researcher-facilitated co-design teams comprised of n = 5 ADRD care partners each. We conducted a series of 5 parallel co-design sessions aimed to engage co-designers in interactive discussions and design activities to create the financial and legal planning tool. We used inductive thematic analysis of design session recordings to identify design requirements. Results: Co-designers were 70% female with a mean age of 67.3 years (standard deviation 9.07) and cared for a spouse (80%) or a parent (20%). Between Sessions 3 and 5, the average system usability scale score of the prototype increased from 89.5 to 93.6, indicating high usability. Analyses yielded 7 overarching design requirements for a legal and financial planning tool: support for action now (eg, prioritized to-do lists); support for action later (eg, reminders for keeping legal documents up-to-date); knowledge when I need it (eg, tailored learning modules); connection to resources I need (eg, state-specific financial support opportunities); everything where I can see it (eg, comprehensive care budgeting tool); sense of privacy and security (eg, password protection); and accessibility for all (eg, tailoring for low-income care partners). Discussion and Implications: The design requirements identified by co-designers provide a foundation from which we can build technology-based solutions to support ADRD care partners in financial and legal planning.

"It made me feel like I wasn't alone in the darkness": exploring dementia care network communication and coordination through a digital health platform.

OBJECTIVE: To explore the use of a shared communication and coordination platform-the CareVirtue journal feature-for care networks of people living with Alzheimer's disease and related dementias to inform the design of care network support technologies. MATERIALS AND METHODS: In the primary study, care networks comprised the primary caregiver and other caregivers they invited to participate (eg, family members, in-home aides) used CareVirtue, for 60 days followed by a semistructured interview to explore primary caregivers' perceptions of usefulness. This secondary analysis focused on use of the shared journal feature of CareVirtue, which allowed care networks to communicate through posts that were shared with the network and to which network members could respond. Journal posts were analyzed using a deductive/inductive content analysis to categorize information behavior. We also conducted a thematic analysis of the interviews to identify primary caregivers' perceptions of the journal's usefulness. RESULTS: Care networks used the journal for: (1) information acquisition, (2) information sharing, (3) strategy development, and (4) information feedback. Thematic analysis revealed that caregivers felt the journal was useful at the individual, care network, and relational levels and that journal integration was influenced by care network structure and relationships. DISCUSSION: Care networks used the journal to document, share, and acquire information; co-create strategies; and provide support. The usefulness of this shared communication and coordination platform included individual and care network level benefits. CONCLUSION: These findings point to the importance of caregiver-centered technologies that support both the individual primary caregiver and the care network.

Conceptualizing caregiving activities for persons with dementia (PwD) through a patient work lens.

Informal caregivers are an integral part of care delivery for persons with dementia (PwD). Informal caregivers take part in a wide range of care activities both individually and collaboratively with other caregivers. Caregiving often involves high demands in the face of limited resources, which can lead to stress, burden, and burnout. To support caregivers, we need to conceptualize caregiving activities they perform, and the networks and roles through which they perform work. We performed a directed content analysis on interview data from twenty caregivers and applied a human factors approach to characterize informal caregiving work. Our results revealed 1) nuances in caregiving roles, 2) differences in caregiving networks, and 3) 13 categories of caregiving activities characterized by time commitments; physical, cognitive and socio-behavioral demands; and varying network dependencies. These findings can be applied in future studies to evaluate the needs of caregiving networks and how to better support them.

Toward a process-level view of distributed healthcare tasks: Medication management as a case study.

We aim to highlight the importance of using a process-level view in analyzing distributed healthcare tasks through a case study analysis of medication management (MM). MM during older adults' hospital-to-skilled-home-healthcare (SHHC) transitions is a healthcare process with tasks distributed across people, organizations, and time. MM has typically been studied at the task level, but a process-level is needed to fully understand and improve MM during transitions. A process-level view allows for a broader investigation of how tasks are distributed throughout the work system through an investigation of interactions and the resultant emergent properties. We studied MM during older adults' hospital-to-SHHC transitions through interviews and observations with 60 older adults, their 33 caregivers, and 79 SHHC providers at 5 sites associated with 3 SHHC agencies. Study findings identified key cross-system characteristics not observable at the task-level: (1) identification of emergent properties (e.g., role ambiguity, loosely-coupled teams performing MM) and associated barriers; and (2) examination of barrier propagation across system boundaries. Findings highlight the importance of a process-level view of healthcare delivery occurring across system boundaries.

Patient Perspectives on Accessing Acute Illness Care.

INTRODUCTION: Older adults use the emergency department (ED) at high rates, including for illnesses that could be managed by their primary care providers (PCP). Policymakers have implemented barriers and incentives, often financial, to try to modify use patterns but with limited success. This study aims to understand the factors that influence older adults' decision to obtain acute illness care from the ED rather than from their PCPs. METHODS: We performed a qualitative study using a directed content analysis approach from February to October 2013. Fifteen community-dwelling older adults age≥65 years who presented to the ED of an academic medical center hospital for care and who were discharged home were enrolled. Semi-structured interviews were conducted initially in the ED and subsequently in patients' homes over the following six weeks. All interviews were audio-recorded, transcribed, verified, and coded. The study team jointly analyzed the data and identified themes that emerged from the interviews. RESULTS: The average age of study participants was 74 years (standard deviation ±7.2 years); 53% were female; 80% were white. We found five themes that influenced participants' decisions to obtain acute illness care from the ED: limited availability of PCP-based care, variable interactions with healthcare providers and systems, limited availability of transportation for illness care, desire to avoid burdening friends and family, and previous experiences with illnesses. CONCLUSION: Community-dwelling older adults integrate multiple factors when deciding to obtain care from an ED rather than their PCPs. These factors relate to personal and social considerations, practical issues, and individual perceptions based on previous experiences. If these findings are validated in confirmatory studies, policymakers wishing to modify where older adults receive care should consider person-centered interventions at the system and individual level, such as decision support, telemedicine, improved transport services, enhancing PCPs' capabilities, and enhancing EDs' resources to care for older patients.

Health@Home Moves All About the House!

It is now well recognized that patients play an important and active role in self-care and disease management, and many of these activities happen in their homes. Information technologies to support such care might be better used if they were designed taking into account the physical context of the home and the health information management needs of the residents. We conducted home-based interviews of 20 adults including an extensive analysis of their personal health information management (PHIM) tasks. Here we present these task descriptions, locations of their performance, and distribution across space and time. Implications for the informatics community include accommodating the distributed nature of tasks in the design of consumer technologies.