Young Adults With Type 1 Diabetes and Their Perspectives on Diabetes-Related Social Media: Qualitative Study

Background: Young adults with type 1 diabetes (T1D) often struggle with self-management and achieving target glycemic control, and thus, may benefit from additional support during this challenging developmental life stage. They are also some of the highest users of social media (SM), which may have some benefits to young people with T1D. Objective: Given the potential of SM support for people with diabetes, we sought to use qualitative methods to explore the perceptions of diabetes SM posts to influence self-care and emotional state of young adults with T1D. Methods: A series of Instagram (Meta) posts were selected by a multidisciplinary team of T1D experts. Young adults aged 18-25 years with T1D duration of 1 year or more were recruited from the clinic to participate in a 60-minute semistructured videoconferencing interview. First, they were queried about their SM use in general and specific to diabetes. Next, they reviewed 10 posts with the interviewer. For each post, perceptions and reactions were queried. Participants were asked about each post's impact on their emotional state and potential influence on diabetes self-care. Finally, they were asked to comment on what the posts emphasized and how they felt after viewing the posts. Interviews were transcribed and coded using thematic analysis. The participants' diabetes management information was extracted from the electronic health record. Results: There were 26 young adults who completed the study. Their mean (SD) age was 22.6 (SD 2.0) years, T1D duration 12.6 (SD 5.9) years, and glycated hemoglobin (HbA1c) 7.6 (SD 1.2%). In this sample, 65.3 were female and 84.6% White. All were using continuous glucose monitors (CGMs) and 80.7% used insulin pumps, 71.4% of which were hybrid closed loop. All participants used SM at least once daily, but most only sometimes or rarely used SM to access diabetes content and rarely or never posted diabetes content themselves. Major themes arising from the interviews centered on the potential for the young adult to connect emotionally through SM, which could be either positive or negative. Overall, for young adults with T1D, SM served to (1) highlight the existence of a community of people with T1D, (2) be a source of new diabetes information, (3) potentially influence diabetes self-management, (4) potentially influence emotional state, and (5) be appealing to the T1D community when the posts possessed certain characteristics (eg, medical accuracy, aesthetically appealing presentation of content). Conclusions: SM has the potential to help young adults with T1D feel a sense of community, seek and share objective and subjective thoughts and feelings about diabetes, motivate diabetes self-care, and positively affect emotional state. However, it may also have the potential to demotivate self-care and exacerbate negative emotional state with regards to diabetes.