Background: Adherence to medications and recommended lifestyle changes are effective strategies to reduce recurrent stroke, yet implementation remains sub-optimal. We lack information from the stroke survivor’s perspective about effective ways to promote engagement in managing risk. The aim was to explore their experiences in risk factor control and identify opportunities for using health information technology (HIT) to support self-management.
Methods: Using a mixed methods design, focus groups (n=8) were convened to explore management of risk after stroke. Results from the focus groups guided the development of a survey, administered to a new group of stroke survivors (n=82) to collect information specifically about blood pressure (BP) management and use of HIT.
Results: Focus group participants described stroke as a call to action to improve health. Themes consistent across groups were: recognizing signs/symptoms of stroke and feeling efficacious to act, knowing risk factors and doing the right things, and challenges and support for doing the right things. Most described using some form of HIT to support risk factor management, such as home BP monitoring, setting phone alarms for medications, and accessing information online. Among survey respondents, 60% reported uncontrolled BP at the time of stroke, with only 37% taking BP medications regularly before stroke and improvement to 75% following stroke. Of those with a home BP monitor (50%), most reported regular monitoring and were 6.2 times (95% CI: 2.1, 18.2) more likely to know their target BP than those without a monitor. Almost all participants reported mobile phone ownership (93%), mostly Smartphones (66%). While 43% use the internet to access health information, only 18% had visited stroke specific sites such as the American Stroke Association. The majority (80%) identified roles for technology and was interested in HIT to support their risk factor control.
Conclusions: Stroke survivors described challenges related to managing risk factors after stroke as well as potential opportunities for HIT. We need to do more to engage stroke survivors and the wide of adoption of mobile phones suggests an innovative method for motivating and supporting stroke survivors in self-management of risk factors.