Lessons Learned from Developing a MCI Virtual Empowerment Program
TimeWednesday, April 1412:50pm - 1:10pm EDT
In the Spring of 2020, closures and safe distancing orders swept much of the United States due to the COVID-19 pandemic. This submission presents a case study of rapidly pivoting a novel, 12-month comprehensive clinical lifestyle program combining education, occupational therapy, cognitive training, and social interaction focused on empowerment research for people newly diagnosed with mild cognitive impairment (MCI) and their care partners to an online application-based education program to sustain participant engagement. The program was developed and operated at Emory’s Cognitive Empowerment Program (CEP).
Georgia Tech developed this education application for use with our MCI and care partner population using a combination of of-the-shelf services and customized user interfaces. We used an iterative development process in which we tested our application with our population and made updates based on our discovery of the need for new capabilities and requirements. We present the discovery of emergent practices by family members and healthcare providers to meet the new requirements for successful virtual engagement.
For some participants, the virtual program led to greater opportunities for empowerment in the form of self agency, expansion, transference, empathy, and connection. This work lends insights and potential new avenues for understanding how lifestyle interventions can empower people with MCI and the role of technology in that process.
Technology-based interventions for improving health behaviors have been shown to have many advantages over traditional clinic settings, including convenience, cost, and the ability to tailor plans and feedback to individual needs. However, telehealth interventions are also associated with challenges for both health-care users and providers, including lack of interactivity and difficulties with technology adoption. Accordingly, adoption of technology-based interventions in MCI and dementia rehabilitation practice has been relatively slow.
Our technology team collaborated with experts in therapeutic care to develop an easy to use application tailored to users with MCI in order to support the larger program while also conducting research in computer-mediated interaction, collaboration, and health informatics. Our program enabled research and experimentation alongside meaningful care.
Development of the application
The premise of the MCI empowerment program is a systematic collaborative approach for design, research, service, and long-term change in the lives of people with MCI. We are committed to an action-research paradigm through our collaborative construction and implementation of the program, our embrace of interdisciplinary expertise and methods, and the respect for and co-design processes with our participants.
Our research is situated within a comprehensive lifestyle program that aims to empower individuals diagnosed with MCI and their care partners by "making someone stronger and more confident, especially in their life and claiming their rights." Enrolled participants are referred to as program “members”; all members carried clinical diagnoses of MCI due to a presumed neurodegenerative condition and were required to commit to attending approximately 8 hours of therapeutic programming per week. Members were also required to identify a spouse or other family member familiar with their daily functioning; these study partners are called “care partners” within the program.
Following assessments, program members participated in twice-weekly classes occurring in a built environment designed specifically for individuals with MCI. “Service providers” taught interactive courses under domains such as physical training (e.g. physical exercise, yoga), cognitive training (e.g. compensatory strategies, calendaring), emotional wellbeing, nutrition, art, and functional independence for daily life activities. Although the classes were designed for members, on occasion care partners would join classes and participate in communal lunches.
As has been done with other chronic diseases, we had designed and deployed a custom mobile application to provide program information, with the intent to generate personalized resources based on individual goals and program data. Enrolled participants received an iPad with the application installed. In early March, there had been little use of the application and there was no content associated with therapeutic classes except for generic overviews. However, with the emergence of the COVID-19 pandemic and the uncertainty surrounding the virus, our team realized the urgent need to discontinue in-person programming and focus on providing virtual programming via asynchronous recorded materials that would be accessed by members via the application. Asynchronous materials were chosen because they offered the ability to be accessed by members with differing schedules.
Our initial challenge was to create an application that could act as a platform to facilitate the interaction between our instructors, who would create and organize course content, and our members and service providers. We thought that online platforms being utilized by K-12 institutions and universities (e.g. Google Classroom and Blackboard) appeared to be too complex for our end users. Therefore, within a 72-hour window, we opted to adopt a blogging platform, Ghost, coupled with the video service, Vimeo, for storing and retrieving course videos. Our technology team provided guidance as our service providers author their first content. However, a key missing component of our initial virtual program was the social interaction that our members so highly valued during in-person programming. During the first month we facilitated members’ use of Zoom for secure video teleconferencing with their coaches within the HIPAA-compliant framework provided by Emory, a university-based healthcare system. After the fourth week of virtual programming, we introduced “coffee chats” as informal social hours for members in the programs. Also, we introduced monthly video support groups for members and twice-monthly support groups for care partners facilitated by our program counselor and social workers. However, our team was aware that these social interactions were not enough to replicate what had been achieved with our in-person programming.
To address this relative lack of social interaction based on feedback from surveys, during the middle of July we introduced “live” online classes two days a week. With COVID-19 cases continuing to increase during the summer and our team facing a longer period of virtual programming than anticipated, we proceeded to onboard our next cohort with no in-person orientation or technology training. This all-online cohorts provide an interesting contrast to the first two cohorts, as their experience of the program did not include any in-person classes or social interaction.
We have demonstrated the feasibility of providing valuable virtual therapeutic content to older adults with MCI and their care partners, which is critically important to the future of our program and others. While our in-person programing offered at a state-of-the art clinical facility is likely a more optimal experience, there are considerable advantages to being able to offer high-quality and effective virtual programming. Many patients may not be able to devote the time and travel required for an in-person program, and the emergence of the COVID-19 pandemic has demonstrated the need for flexibility in offering therapy options, both in-person or online. While we seek ways to broaden the reach and impact of our multifaceted lifestyle interventions for people with MCI, we have demonstrated that the use of a virtual, 12-month comprehensive clinical lifestyle program can enable MCI members working with their care partners to learn new skills, experiment with and adopt new healthy behaviors, and develop a deeper understanding and empathy for the challenges they face together. The results of this research will advise future projects for audiences with MCI and help researchers interested in developing a platform to support empowerment.