Picturing Quality of Life: Exploring the Perceptions of People Living With Stroke and Traumatic Brain Injury Through Virtual Photovoice

Background: People with neurogenic communication disorders are rarely involved in developing quality-of-life (QOL) measures. We explored QOL perceptions from those with chronic communication disability using Photovoice, a participatory research method that empowers participants to share experiences through self-curated photographs. Method: Individuals in two small groups with communication disability due to stroke or traumatic brain injury participated in this virtual project. Photographers and other research team members met regularly to discuss photographs taken and how they represented aspects of QOL and then collaboratively determined photograph captions and developed themes. Results: Themes from photographers with aphasia were Faith and Gratitude, On the Go with Friends, Independence, and Looking Ahead. Themes from photographers with TBI were Isolated and Overwhelmed, Inconsistent and Erratic Emotions, Neurofatigue, Support, and the Path Ahead. Discussion/Conclusion: Photovoice is an accessible means of examining QOL for individuals with communication disability. Results suggest alternative ways to gather QOL perceptions beyond researcher-driven measures.