Background and Aims:
Self-management programs for stroke patients can improve disability, confidence in recovery and quality of life. We evaluated the educational needs of patients and caregivers using an online self-management program in the outpatient setting, to identify opportunities for improvement. Additionally, patients and caregivers’ experience when using this program was recorded.
In-depth semi-structured interviews were undertaken with acute and chronic stroke patients, using a descriptive, qualitative research design. Their experiences with a prototype self-management website containing rehabilitation video-exercises, e-learning modules and social support information was assessed, after 2 weeks of use.
We recruited stroke survivors (n=8) and caregivers (n=9) with a mean age of 64 (range 36-82). Stroke survivors expressed their need for personal care when coping with the strong emotional burden of stroke, rather than telecare. However, personal care could be complemented with telecare. Narrative video-education was preferred to text-heavy or factual content. An easy-to-access digital user interface and a personalized content were preferred, as opposed to generic content. Self-management skills for dealing with the daily challenges of stroke were related to the capacity for emotional and cognitive self-regulation. Recovery of physical impairment was associated with the motivation for repeated exercise and the level of social support and stimuli.
When using online self-management programs for stroke patients in the outpatient setting, the information-architecture should offer an interactive, user-friendly and personalized content, focusing on biopsychosocial self-management and education. Telecare is seen as a complementary tool in follow-up.