Abstract
Background
Patients with inflammatory bowel disease (IBD) can have knowledge gaps regarding their disease and its management, which may lead to anxiety and reduced quality of life. They often use social media as a tool to seek information and manage their chronic disease. The goal of this study was to develop a series of educational videos optimized for social media that are informed by patient insights and address their experiences, concerns, and unmet educational needs.
Methods
We used a human-centered design approach to guide our qualitative data collection and analysis. We performed two focus groups and 6 semi-structured interviews with patients with IBD to gain insights into their educational needs and expectations regarding these videos. In total, 19 patients with diverse demographic profiles and varying health and digital literacy levels were included in our purposive sample. The collected data was transcribed and analyzed using a thematic analysis. We visualized patients’ thoughts, feelings, and needs in an empathy map. The mapping process helped us create a shared understanding of patient-users, and generate ideas on the topic and the script of each video. Subsequently, 5 video prototypes were built and tested by 22 patients with IBD. The collected feedback was used to refine the prototypes and develop the final videos.
Results
We noted conflicting thoughts and feelings towards online information; on one hand, IBD-related online information was perceived as overwhelming and unreliable, but on the other it was empowering and helpful. Five major themes for the video topics also emerged from the analyses (Figure 1). First, patients noted a major need to learn about the risks and benefits associated with available treatment options. Participants expressed concerns regarding starting biologics, biologics side-effects and long-term effectiveness. Second, they accentuated the need to know how to be self-advocates in order to navigate their insurance and to obtain the information they need from their providers. Third, they mentioned the importance of learning ways to stay healthy beyond just medical therapy. Fourth, they wanted information on how to cope with their IBD diagnosis and live with their condition. Fifth, participants expressed desire for a video that educates their families, friends and colleagues about IBD, so that they can better understand IBD patients’ psychological and physical experiences.
Conclusion
We used a human centered qualitative approach to get an in-depth understanding of IBD patients’ educational needs, thoughts and feelings. A series of focus groups and interviews were performed with patients, which informed the development of 5 educational videos that are tailored to suit their needs. In the next phases of this study, the videos will be formally tested and widely disseminated through social media.
DIGITAL LITERACY OF SOCIAL MEDIA USERS IN MEDAN CITY IN FACING HOAX
