“When the Word Is Too Big, It’s Just Too Hard”: Stroke Survivors’ Perspectives About Health Literacy and Delivery of Health Information

Background: Health literacy can impact comprehension, recall, and implementation of stroke-related information, especially in the context of cognitive and communication impairments, cultural-linguistic diversity, or ageing. Yet there are few published lived experience perspectives to inform tailoring of health information. Objectives: We aimed to (i) explore perspectives about the impact of health literacy on information needs and preferences of stroke survivors with diverse characteristics; and (ii) identify ways to better tailor information delivery for stroke survivors with low health literacy. Methods: This qualitative study was conducted using the Ophelia (Optimising Health Literacy and Access) methodology. First, health literacy information was collected from participants. Hierarchical cluster analysis was used to identify different health literacy profiles within the participant sample. Four profiles were identified, from which four case vignettes were created. Second, focus groups and interviews were conducted to explore the health information needs and preferences of the case vignettes. Qualitative data were analysed with reflexive thematic analysis. Results: Nineteen people participated (median (IQR) age = 65 (49, 69), 10 (53%) female); five used interpreters. Participants represented diverse socioeconomic, cultural, and stroke-related characteristics, and generally had low health literacy. Four qualitative themes were generated highlighting the impact of Individual knowledge, capacity, and beliefs about stroke and health services on people’s capacity to engage with stroke-related information; Tailoring and personalisation of information delivery to the patient’s knowledge, capacity, and beliefs; Having a support network to rely on; and patients Feeling like I am in safe hands of clinicians and services. Conclusions: Findings provide several important directions for improving accessible stroke information delivery suitable for people with all levels of health literacy, and to optimise patient understanding, recall, and implementation of healthcare information.