Reading difficulties in aphasia: a survey of individuals with aphasia, caregivers, and speech-language pathologists

Background Reading is an important life skill that can be impaired in many persons with aphasia (PWA). However, compared to spoken language expression and comprehension, less is known about the nature and prevalence of specific reading difficulties that are experienced by PWA and current practices and resources available for clinical management.Aims This survey study examined the experiences and observations of PWA, caregivers, and speech-language pathologists (SLPs) to characterize the nature of reading difficulties and their impact. In addition, we explored how reading is addressed in clinical assessment and treatment.Methods A total of 130 respondents completed either a live videoconferencing survey (40 PWA) or a self-administered survey online (40 caregivers, 50 SLPs). Quantitative and qualitative analyses were conducted.Results All groups reported a high frequency of reading difficulties in PWA. The most frequently reported challenges by PWA and caregivers were in the areas of oral reading fluency and reading comprehension of sentences and connected text. SLPs more commonly reported observing letter and single-word level deficits in PWA. Importantly, despite prevalent reading difficulties, enjoyment in reading activities did not change post-stroke compared to pre-stroke. Qualitative analyses revealed that reading deficits impact PWA’s identity, independence, emotional well-being, and social engagement. SLPs’ reported challenges included limited session time, lack of evidence-based materials, and lack of training.Conclusion These findings suggest that reading difficulties in PWA impact life participation and well-being of PWA and caregivers. Perspectives from three stakeholder groups underscore the importance of extending clinical reading treatment tools beyond isolated word-level tasks to include sentence- and connected-text materials that better reflect the prioritized needs by PWA and caregivers.