Abstract
Background:
Researchers estimate the prevalence of stroke caregiver burden to be 25-50%. Currently, there are no feasible, user-centered interventions in practice to improve stroke caregiver burden.
Objectives:
To refine the Stroke Caregiver Support System, a mobile-friendly website, with feedback from structured interviews, and to test the feasibility of the Stroke Caregiver Support System with a small pilot study.
Methods:
We employed a user-centered design framework for the development of our intervention, which includes 9 topical modules with brief introductory videos and curated resources from publically available sources. To refine the intervention, we used feedback from structured qualitative interviews with stroke caregivers for each aspect of the intervention. We then enrolled 8 stroke caregivers in a pilot study to measure baseline caregiver burden and depressive symptoms and test the feasibility of the intervention. All descriptive statistics were computed using SAS 9.4.
Results:
In structured qualitative interviews (N=4), stroke caregivers were aged 53-59 years; 3 of these caregivers were daughters of stroke survivors, and 2 identified as Hispanic/Latino. The main criticisms of the website included: a) low volume on videos, b) the need for more specific information for the physical challenges of caregiving, and c) the need to improve the language to make it less “scientific.” Generally, caregivers found the modules relevant and the content useful. The pilot study included 8 caregivers (mean [SD] age = 45 [17]), including 7 females, 5 who identified as Hispanic/Latino, and 6 who had a college education or greater. These caregivers had a mean (SD) Zarit burden score of 17 (8) and mean (SD) 10-item CES-D score of 14 (5). In general, caregivers found the website content and organization helpful, but the design and layout needed improvement. Caregivers emphasized that each “caregiver journey” was different, so tailored intervention is needed.
Conclusions:
Caregivers provided important feedback for the design of this mobile-friendly, educational intervention. Post-intervention measures will give insight into the feasibility and potential efficacy of the Stroke Caregiver Support System to attenuate caregiver burden.