The Online Health Information–Seeking Behaviors of People Who Have Experienced Stroke: Qualitative Interview Study

Background Stroke is a leading cause of death and disability worldwide. As health resources become digitized, it is important to understand how people who have experienced stroke engage with online health information. This understanding will aid in guiding the development and dissemination of online resources to support people after stroke. Objective This study aims to explore the online health information–seeking behaviors of people who have experienced stroke and any related barriers or navigational needs. Methods Purposeful sampling was used to recruit participants via email between March and November 2022. The sampling was done from an existing cohort of Australian stroke survivors who had previously participated in a randomized controlled trial of an online secondary prevention program. The cohort consisted of people with low levels of disability. Semistructured one-on-one interviews were conducted via phone or video calls. These calls were audio recorded and transcribed verbatim. The data were analyzed by 2 independent coders using a combined inductive–deductive approach. In the deductive analysis, responses were mapped to an online health information–seeking behavior framework. Inductive thematic analysis was used to analyze the remaining raw data that did not fit within the deductive theoretical framework. Results A sample of 15 relatively independent, high-functioning people who had experienced stroke from 4 Australian states, aged between 29 and 80 years, completed the interview. A broad range of online health information–seeking behaviors were identified, with most relating to participants wanting to be more informed about medical conditions and symptoms of their own or of a family member or a friend. Barriers included limited eHealth literacy and too much generalization of online information. Online resources were described to be more appealing and more accessible if they were high-quality, trustworthy, easy to use, and suggested by health care providers or trusted family members and friends. Across the interviews, there was an underlying theme of disconnection that appeared to impact not only the participants’ online health information seeking, but their overall experience after stroke. These responses were grouped into 3 interrelated subthemes: disconnection from conventional stroke narratives and resources, disconnection from the continuing significance of stroke, and disconnection from long-term supports. Conclusions People who have experienced stroke actively engage with the internet to search for health information with varying levels of confidence. The underlying theme of disconnection identified in the interviews highlights the need for a more comprehensive and sustained framework for support after stroke beyond the initial recovery phase. Future research should explore the development of tailored and relatable internet-based resources, improved communication and education about the diversity of stroke experiences and ongoing risks, and increased opportunities for long-term support.