Background: Health literacy, the ability to access, understand and utilise health information, strongly influences health outcomes, including hospital readmission post-stroke.
Aims: To examine the health literacy, information needs and preferences of adults with stroke.
Methods: Inclusion: community-dwelling adults, attending St Vincent’s (Melbourne) stroke clinic.
Mixed-methods using modified intervention mapping approach 'Ophelia' (OPtimising HEalth LIteracy and Access). Stage 1: interview: Brief Health Literacy Screener, Health Literacy Questionnaire, information needs.
Researchers then wrote patient vignettes representing these data.
Stage 2: focus groups (video-conference) or telephone interviews discussing how stroke services could support the information needs of the vignette ‘characters’.
Descriptive statistics characterised participants’ demographics and health literacy. Using thematic analysis, codes were identified, then grouped into themes.
Results: 19 participants (10 female, median age 65Yr (IQR 49,69), mRS 2 (IQR 1,2), 10 months post-stroke (IQR 6,14), 8 born outside Australia, 5 used interpreters. Seven (37%) had adequate functional health literacy (i.e., reading and comprehending patient materials). Ten (53%) usually/always found it easy to talk with healthcare professionals, and 11 (58%) usually/always found it easy to navigate the healthcare system.
Ten participated in Stage 2 focus groups/interview.
Four themes and one subtheme described participants’ health literacy needs and preferences: 1. “Individual knowledge, capacity and beliefs about stroke and health services” 1.1 “Systemic and societal context influencing individual stroke literacy”; 2.“Tailoring and personalisation of information delivery”; 3.“Having a support network to rely on”; and 4.“Feeling like I’m in safe hands”, which refers to the services stroke survivors receive, and the clinicians who deliver those services.
Participants provided suggestions about tailoring, personalisation and method of information delivery, considering individuals’ abilities and available supports.
Conclusion: Participants highlighted that understanding, recall and implementation of healthcare information is underpinned by information delivery that is tailored to a patient’s individual knowledge and capabilities, supported by broader family and social networks, and delivered with demonstrable care by practitioners and services.