Using Storytelling to Reflect on Experiences with Acquired Brain Injury: The Unmasking Project

Research Objectives: To explore how people with acquired brain injury (ABI) express their experiences of brain injury through narratives and visual art

Design: Mixed methods with use of content and sentiment analyses

Setting: public domain/social media

Participants: Data were collected from the Unmasking Project web platform, as well as hosted Unmasking events. All mask art available on the Unmasking Project website as of 1/1/2023 was manually screened and organized in an online database. Projects that did not include a description of ABI injury characteristics, narrative accompaniment to the mask, or were identified as developmental or neurodegenerative brain injuries were excluded.

Interventions: N/A

Main Outcome Measures: Multiphase mixed method approach, qualitative (QUAL) content analysis for storytelling intention, followed by a quantitative (QUAN) sentiment analysis, and finally a QUAL content analysis using the Hexagonal model of wellness (Hettler, 1976).

Results: There were 1201 masks with narratives available for analysis. Following an iterative coding process exploring storytelling intentions, two themes emerged that aligned with previous literature (D’Cruz et al., 2020): 1) sharing and helping and 2) reflecting and learning. Next, sentiment analysis found that 35% were positive, 27% of narratives described both positive and negative components, 23% were undefined, and 15% were negative. Finally, narratives were coded into themes based on the Dimensions of Wellness including cognitive, emotional, physical, social, spiritual, & occupational health. Two other themes were added: recreational health and other. Positive sentiments were mostly in social and recreational health. Negative sentiments were primarily in physical and cognitive domains. The distribution of positive and negative posts was equal in emotional health. Moreover, mixed sentiments were most prevalent in emotional health, reflecting efforts to overcome limitations.

Conclusions: These narratives from people with ABI provide a sense of affective experiences in important health domains. Findings can inform future studies on holistic wellness and recovery from ABI. Additionally, narratives from visual art may be a platform to collect information on perceived wellness from people with ABI.

Author(s) Disclosures: The authors have no relevant financial or nonfinancial relationships to disclose.