JMIR Publications

ABSTRACT

Background:

Stroke is a leading cause of death and disability worldwide. As health resources become digitized, it is important to understand how people with 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:

To explore the online health information seeking behaviors of people who have experienced stroke and related barriers or navigational needs.

Methods:

Purposeful sampling was used to recruit participants via email between March and November 2022 from an existing cohort of Australian stroke survivors who had previously participated in a randomized controlled trial of an online secondary prevention program. Semi-structured one on one interviews were conducted via phone or video call, audio recorded and transcribed verbatim. The data was analyzed by two 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 diverse sample of 15 people with stroke from four Australian states and aged between 29 and 80 years completed an 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 a family or friend. Barriers included limited eHealth literacy and online information being too generalized. Online resources were described to be more appealing and more accessible if they were high-quality, trustworthy, easy to use, and suggested by healthcare providers or trusted family and friends. Across the interviews there was an underlying theme of disconnection that appeared to impact not only participants’ online health information seeking, but their overall post-stroke experience. These responses were grouped into three interrelated subthemes: (1) disconnection from conventional stroke narratives and resources, (2) disconnection from the continuing significance of stroke, and (3) disconnection from long term supports.

Conclusions:

People with 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 online resources, improved communication and education about the diversity of stroke experiences and ongoing risks, and increased opportunities for long term support.