Concerns and needs in people with TBI (Pei & O'Brien, 2023)

Purpose: Given the limited availability of topic-specific resources, many people turn to anonymous social media platforms such as Reddit to seek information and connect to others with similar experiences and needs. Mining of such data can therefore identify unmet needs within the community and allow speech-language pathologists to incorporate clients’ real-life insights into clinical practices.

Method: A mixed-method analysis was performed on 3,648 traumatic brain injury (TBI) subreddit posts created between 2013 and 2021. Sentiment analysis was used to determine the sentiment expressed in each post; topic modeling and qualitative content analysis were used to uncover the main topics discussed across posts. Subgroup analyses were conducted based on injury severity, chronicity, and whether the post was authored by a person with TBI or a close other.

Results: There was no significant difference between the number of posts with positive sentiment and the number of posts with negative sentiment. Comparisons between subgroups showed significantly higher positive sentiment in posts by or about people with moderate-to-severe TBI (compared to mild TBI) and who were more than 1 month postinjury (compared to less than 1 month). Posts by close others had significantly higher positive sentiment than posts by people with TBI. Topic modeling identified three meta-themes: Recovery, Symptoms, and Medical Care. Qualitative content analysis further revealed that returning to productivity and life as well as sharing recovery tips were the primary focus under the Recovery theme. Symptom-related posts often discussed symptom management and validation of experiences. The Medical Care theme encompassed concerns regarding diagnosis, medication, and treatment.

Conclusions: Concerns and needs shift over time following TBI, and they extend beyond health and functioning to participation in meaningful daily activities. The findings can inform the development of tailored educational resources and rehabilitative approaches, facilitating recovery and community building for individuals with TBI.

Supplemental Material S1. TBI subreddit codebook.

Supplemental Material S2. Eligible posts.

Supplemental Material S3. R codes of sentiment analysis.

Supplemental Material S4. Python codes of topic modeling.

Pei, Y., & O’Brien, K. H. (2023). Use of social media data mining to examine needs, concerns, and experiences of people with traumatic brain injury. American Journal of Speech-Language Pathology, 33(2), 831–847. https://doi.org/10.1044/2023_AJSLP-23-00297