RISE ABOVE: A PATIENT-CENTERED WEB-BASED INTERVENTION FOR REDUCING INTERNALIZED STIGMA IN PEOPLE WITH EPILEPSY
Date of Award
Master of Science in Electrical Engineering (MSEE)
Electrical, Computer, and Biomedical Engineering
Telemedicine and e-health has grown significantly over the last few decades with the evolution of information and communication technology. The application and implementations of information technologies have given rise to the delivery of remote patient care and contactless online healthcare service, during the uncontrolled outbreak of COVID-19 pandemic. Innovations in healthcare have proliferated during that period and enabled physicians to provide treatments for patients starting from primary care to cognitive disability.
Health related stigma, also known as internalized stigma, is a common cognitive illness in people with epilepsy (PWE), a neurological disorder that induces sudden unpredictable seizures within the human body. Due to this uncontrolled illness, they develop a feeling of embarrassment and inferiority, thus reducing their quality of life. People with epilepsy, being highly exposed to desktop computers, laptops or other mobile devices, we develop an online based behavioral intervention solution, in collaboration with Rhode Island Hospital and HOBSCOTCH Institute at Dartmouth Hitchcock Medical Center that provides education video, audio and text based content to help PWE manage stress and overcome critical challenges of life, to help them overcome the stigma feeling and improve quality of life. The Master Thesis is written to fulfill two important research goals: (1) Design, develop and deploy internet based behavioral intervention for PWE to make stigma management related content accessible. (2) Perform usability study on user experience, user interface of the system and its functionality. In this research we develop the system architecture including front end, backend and database solution, initially, then we use the system to collect data of epilepsy patients to learn and analyze their experience, in order to achieve maximum user satisfaction. In the next phase of usability study, we use user feedback to perform qualitative analysis on each functionality of the system and the UI design. Also, we collected system usage data to perform quantitative analysis on user data. In the first phase, the deployment of the application was the biggest challenge that we encountered in this research.4 We finally managed to deploy it on Heroku, a cloud-based application server. Another challenge we face during the second phase is recruiting epilepsy patients from clinicians. We contacted members of epilepsy support groups on social media and reached out to clinicians over email.
In this thesis, we showed the usability test results of 9 participants, out of which, 56% were health participants and 44% were people with epilepsy. From our analysis we found 33.3% of participants used the deep breathing exercise more frequently, 62.5% of the participants have used Google Chrome browser to access the website and almost 75% have used it from the desktop. From the users’ responses between 80-100% participants think that the instructions and interface were clear and easy to understand. 100% of the participants will recommend others to use the application. However, approximately 60% of them think that it might not be able to replace in-person clinician follow-ups. Over 50% of the participants think that the features, such as, learning about the program, log in to the system, learning module, ratings, the guided and practice exercises are easy and useful, however approximately, 30% of them think that the ‘Watch Again’ feature is not useful, and it is redundant. The stress rating outcome for deep breathing exercises have improved by 1 scale points on average for 7 participants. For relaxation, mindfulness meditation and visualization, not all participants have completed the practice session. However, 2-3 participants have shown stress level improvement by an average of 0.5 to 1.5 scale points. Most of the participants have spent maximum time on deep breathing exercise. Only one participant has spent over 1 hour in mindfulness meditation. Average time spent on each of all four exercises was 25 minutes.
Ummie, Sabah, "RISE ABOVE: A PATIENT-CENTERED WEB-BASED INTERVENTION FOR REDUCING INTERNALIZED STIGMA IN PEOPLE WITH EPILEPSY" (2022). Open Access Master's Theses. Paper 2293.
Available for download on Sunday, January 12, 2025