Background: Following stroke, many survivors require assistance with activities of daily living from untrained individuals. These informal caregivers assume multiple new responsibilities, which can generate stress, especially when their own needs are inadequately addressed during a patient’s recovery.
Methods: A nationwide survey mailed to 11,720 stroke survivors through the National Stroke Association with a cover letter asking them to give the IRB approved informed consent and survey to their informal caregiver, if applicable. The 17 question survey asked caregivers about demographics, if they own a cell/smart phone, and the caregiver’s opinion about what resources in a mobile app (if any) would be useful – namely: 1) scheduling multiple tasks, 2) finding information about stroke resources, 3) finding local resources, 4) tracking fitness and diet, and 5) communication with their stroke survivor. The survey was developed using focus groups in 2 states. For all questions logistic regression determined if there were racial, gender, or age disparities.
Results: 396 stroke caregivers [(299 (76%) female, 96 (24%) African-American, 42 (11%) Hispanic/Latino, and 210 (53%) Caucasian], aged 20-99 years (mean 59.5 ± 13.3) returned surveys; 96% owned a cell phone; 60% of all caregivers owned a smart phone. Caregivers in this sample reported features of the app to be important including: doctor/rehab appointments (80%, 95% CI, 76-84%), links to trustworthy medical information (84%, 95% CI 80-87%), stroke support groups in my area (81%, 95% CI 77-85%), exercises (76%, 95% CI 71-80%), and a touch screen with useful phrases (76%, 95% CI 71-80%). When examining the utility of the 5 app resources (outlined above), Latino (88%-74%) and African-American (84%-77%) caregivers reported the highest rate of usefulness across the 5 aspects). As age increased, the caregivers’ reporting of mobile app usefulness decreased (p < 0.05). However, in the oldest group (63+), 67-79% of caregivers reported that all 5 resources would be useful in a mobile app.
Conclusions: Implementation of a mobile app unique to stroke caregivers with resources is desired by this diverse, national sample of informal caregivers and holds potential to alleviate stress and improve patient’s recovery.