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1. Empowering Dementia Caregivers: Incorporating Caregiving Training Resources Into Current Procedural Technology Codes

   https://doi.org/10.1097/NUR.0000000000000803  

   Ko, Eunjung; Rose, Karen M.; Wright, Kathy D. (January 2024, Clinical Nurse Specialist)

   Abstract Purpose/ObjectivesWe aim to explore Current Procedural Terminology (CPT) codes for caregiving training services and their potential impacts on caregivers of people living with dementia. Description of the Project/ProgramIn response to the growing need for support for caregivers of people living with physical and mental health issues, CPT codes for caregiving training services will be activated for the calendar year 2024. These codes cover (1) family group behavior management and modification training services and (2) caregiver training for techniques to help patients maintain their quality of life. Caregivers will access such training support through the CPT codes provided by treating practitioners. The duration of training will vary by code. OutcomeImplementing CPT codes for caregiver training services highlights the vital role of caregivers in patient care. This support may improve their skills and communication with healthcare providers. However, timing and accessibility in care delivery need clarification, especially for caregivers of people living with dementia. Regular skill assessment and culturally competent care are essential. Before providing the service, provider training may also promote person-centered care, benefiting patients and their caregivers. ConclusionActivating CPT codes for caregiving training services may enhance caregivers' support and skills, including dementia care. 

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2. Advance Planning for Technology Use in Dementia Care: Development, Design, and Feasibility of a Novel Self-administered Decision-Making Tool

   https://doi.org/10.2196/39335  

   Berridge, Clara; Turner, Natalie R; Liu, Liu; Karras, Sierramatice W; Chen, Amy; Fredriksen-Goldsen, Karen; Demiris, George (January 2022, JMIR Aging)

   BackgroundMonitoring technologies are used to collect a range of information, such as one’s location out of the home or movement within the home, and transmit that information to caregivers to support aging in place. Their surveilling nature, however, poses ethical dilemmas and can be experienced as intrusive to people living with Alzheimer disease (AD) and AD-related dementias. These challenges are compounded when older adults are not engaged in decision-making about how they are monitored. Dissemination of these technologies is outpacing our understanding of how to communicate their functions, risks, and benefits to families and older adults. To date, there are no tools to help families understand the functions of monitoring technologies or guide them in balancing their perceived need for ongoing surveillance and the older adult’s dignity and wishes. ObjectiveWe designed, developed, and piloted a communication and education tool in the form of a web application called Let’s Talk Tech to support family decision-making about diverse technologies used in dementia home care. The knowledge base about how to design online interventions for people living with mild dementia is still in development, and dyadic interventions used in dementia care remain rare. We describe the intervention’s motivation and development process, and the feasibility of using this self-administered web application intervention in a pilot sample of people living with mild AD and their family care partners. MethodsWe surveyed 29 mild AD dementia care dyads living together before and after they completed the web application intervention and interviewed each dyad about their experiences with it. We report postintervention measures of feasibility (recruitment, enrollment, and retention) and acceptability (satisfaction, quality, and usability). Descriptive statistics were calculated for survey items, and thematic analysis was used with interview transcripts to illuminate participants’ experiences and recommendations to improve the intervention. ResultsThe study enrolled 33 people living with AD and their care partners, and 29 (88%) dyads completed the study (all but one were spousal dyads). Participants were asked to complete 4 technology modules, and all completed them. The majority of participants rated the tool as having the right length (>90%), having the right amount of information (>84%), being very clearly worded (>74%), and presenting information in a balanced way (>90%). Most felt the tool was easy to use and helpful, and would likely recommend it to others. ConclusionsThis study demonstrated that our intervention to educate and facilitate conversation and documentation of preferences is preliminarily feasible and acceptable to mild AD care dyads. Effectively involving older adults in these decisions and informing care partners of their preferences could enable families to avoid conflicts or risks associated with uninformed or disempowered use and to personalize use so both members of the dyad can experience benefits. 

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3. Opportunities and Challenges for Augmented Reality in Family Caregiving: Qualitative Video Elicitation Study

   https://doi.org/10.2196/56916  

   Albright, Liam; Ko, Woojin; Buvanesh, Meyhaa; Haraldsson, Harald; Polubriaginof, Fernanda; Kuperman, Gilad J; Levy, Michelle; Sterling, Madeline R; Dell, Nicola; Estrin, Deborah (January 2024, JMIR Formative Research)

   BackgroundAlthough family caregivers play a critical role in care delivery, research has shown that they face significant physical, emotional, and informational challenges. One promising avenue to address some of caregivers’ unmet needs is via the design of digital technologies that support caregivers’ complex portfolio of responsibilities. Augmented reality (AR) applications, specifically, offer new affordances to aid caregivers as they perform care tasks in the home. ObjectiveThis study explored how AR might assist family caregivers with the delivery of home-based cancer care. The specific objectives were to shed light on challenges caregivers face where AR might help, investigate opportunities for AR to support caregivers, and understand the risks of AR exacerbating caregiver burdens. MethodsWe conducted a qualitative video elicitation study with clinicians and caregivers. We created 3 video elicitations that offer ways in which AR might support caregivers as they perform often high-stakes, unfamiliar, and anxiety-inducing tasks in postsurgical cancer care: wound care, drain care, and rehabilitative exercise. The elicitations show functional AR applications built using Unity Technologies software and Microsoft Hololens2. Using elicitations enabled us to avoid rediscovering known usability issues with current AR technologies, allowing us to focus on high-level, substantive feedback on potential future roles for AR in caregiving. Moreover, it enabled nonintrusive exploration of the inherently sensitive in-home cancer care context. ResultsWe recruited 22 participants for our study: 15 clinicians (eg, oncologists and nurses) and 7 family caregivers. Our findings shed light on clinicians’ and caregivers’ perceptions of current information and communication challenges caregivers face as they perform important physical care tasks as part of cancer treatment plans. Most significant was the need to provide better and ongoing support for execution of caregiving tasks in situ, when and where the tasks need to be performed. Such support needs to be tailored to the specific needs of the patient, to the stress-impaired capacities of the caregiver, and to the time-constrained communication availability of clinicians. We uncover opportunities for AR technologies to potentially increase caregiver confidence and reduce anxiety by supporting the capture and review of images and videos and by improving communication with clinicians. However, our findings also suggest ways in which, if not deployed carefully, AR technologies might exacerbate caregivers’ already significant burdens. ConclusionsThese findings can inform both the design of future AR devices, software, and applications and the design of caregiver support interventions based on already available technology and processes. Our study suggests that AR technologies and the affordances they provide (eg, tailored support, enhanced monitoring and task accuracy, and improved communications) should be considered as a part of an integrated care journey involving multiple stakeholders, changing information needs, and different communication channels that blend in-person and internet-based synchronous and asynchronous care, illness, and recovery. 

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4. CARETAKVR: A Virtual Reality Environment to Train Alzheimer's Caregivers

   Fredericks, Erik M. Kerns (January 2019, Proceedings of the 2019 American Society for Engineering Education North Central Section Conference)

   The number of patients diagnosed with Alzheimer's disease is significantly increasing, given the boom in the aging population (i.e., 65 years and older). There exist approximately 5.5 million people in the United States that have been diagnosed with Alzheimer's, and as a result friends and family often need to provide care and support (estimated at 15 million people to the cost of $1.1 trillion). Common symptoms of Alzheimer's disease include memory loss, drastic behavioral change, depression, and loss in cognitive and/or spatial abilities. To support the growing need for caregivers, this project developed a prototype virtual reality (VR) environment for enabling caregivers to experience typical scenarios, as well as common strategies for managing each scenario, that they may experience when providing care and support, thereby providing. For instance, a patient may turn on a gas stove and then leave, forgetting that the stove is on. The caregiver then would be required to turn the stove off, to minimize any potential dangers. The prototype environment, CARETAKVR, was developed as an undergraduate research project for learning the process of research as well as the Unity programming environment and VR. The prototype provides a gamified training tool, masking scenarios as objectives and success with a score, to enable the potential caregiver to feel rewarded for correctly supporting the patient. The virtual patient is controlled via artificial intelligence and follows an initial set of guidelines to behave as a patient with early-stage Alzheimer's may behave. The caregiver is provided with a set of tasks to perform, in VR space, to achieve their goals for each scenario. Common tasks include Check Refrigerator, Check Stove, and Comfort Patient. This project has been demonstrated to colleagues in the health care domain and has seeded future collaborations to iterate the capabilities of this tool. All project artifacts have been open-sourced and are available online. 

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5. Co-Designing the MOSAIC mHealth App With Breast Cancer Survivors: User-Centered Design Approach

   https://doi.org/10.2196/59426  

   Nuseibeh, Betsey Zenk; Johns, Shelley A; Shih, Patrick C; Lewis, Gregory F; Gowan, Tayler M; Jordan, Evan J (January 2024, JMIR Formative Research)

   BackgroundBreast cancer is the world’s most prevalent cancer. Although the 5-year survival rate for breast cancer in the United States is 91%, the stress and uncertainty of survivorship can often lead to symptoms of depression and anxiety. With nearly half of breast cancer survivors living with stress and symptoms of depression and anxiety, there are a significant number of unmet supportive care needs. New and potentially scalable approaches to meeting these supportive care needs are warranted. ObjectiveThis study aimed to engage breast cancer survivors and acceptance and commitment therapy (ACT) content experts in user-centered design (UCD) to develop a mobile health app (MOSAIC [Mobile Acceptance and Commitment Therapy Stress Intervention]) using stress intervention strategies. MethodsWe held 5 UCD sessions with 5 breast cancer survivors, 3 ACT content experts, 2 user experience design experts, and 1 stress expert facilitator over the course of 10 weeks. The sessions were developed to lead the 10 co-designers through the 5-step UCD process (eg, problem identification, solution generation, convergence, prototyping, and debriefing and evaluation). Following the fifth session, a prototype was generated and evaluated by the 5 breast cancer survivors and 3 ACT experts using the System Usability Scale, Acceptability E-scale, and a brief set of semistructured interview questions. ResultsThe 10 co-designers were present for each of the 5 co-design sessions. Co-designers identified 5 design characteristics: simple entry with use reminders (behavioral nudges), a manageable number of intervention choices, highly visual content, skill-building exercises, and social support. A total of 4 features were also identified as critical to the use of the tool: an ACT and breast cancer–specific onboarding process, clean navigation tools, clear organization of the interventions, and once-per-week behavioral nudges. These requirements created the foundation for the app prototype. The 5 breast cancer survivors and 3 ACT co-designers evaluated the app prototype for 1 week, using an Android smartphone. They rated the app as usable (mean 79.29, SD 19.83) on the System Usability Scale (a priori mean cutoff score=68) and acceptable (mean 24.28, SD 2.77) on the Acceptability E-scale (a priori mean cutoff score=24). ConclusionsThrough the UCD process, we created an ACT app prototype with 5 breast cancer survivors, 3 ACT experts, and 2 UCD designers. The next step in our research is to continue the assessment and refining of the prototype with additional breast cancer survivors. Future work will pilot-test the app to examine the feasibility of a large-scale, randomized control trial. Studies will enroll increasingly diverse breast cancer survivors to broaden the generalizability of findings. 

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