Background:
Stroke is a leading cause of disability in the United States. Family members often have to assume the role of informal caregiver. Despite an abundance of resources, caregiver burden continues to be a major issue, leading to negative outcomes such as depression.
Objective:
To characterize the needs of stroke caregivers in order to inform the design of a mobile-friendly website intervention. We hypothesized that a website intervention, designed using a user-centered design approach, will help equip caregivers for the caregiving role and reduce associated caregiver burden.
Methods:
Focus groups with caregivers of stroke patients were conducted in English (N=3) and Spanish (N=4) to gather data on major obstacles experienced by caregivers. Participants were also asked about the challenging aspects of caregiving and their use of mobile devices.
Results:
Of seven total caregivers (86% Hispanic, 100% female, mean [SD] age=60 [9] years), 86% were smartphone users. The median (interquartile range) score on the short form Zarit Burden scale was 18 (12-20), indicating elevated caregiver burden in our sample. Across all participants, 100% cited lack of training as a major challenge, 86% cited financial difficulties and dealing with patient cognitive issues, 71% reported physical and emotional challenges, 43% participants cited time constraints and patient behavioral issues, and 29% reported problems with patient communication and acceptance of their situation. Using these findings, we designed a Stroke Caregiver Support System prototype by collecting existing resources from publically available sources based on the issues identified by our focus groups. Website usability testing was conducted to gather feedback caregivers and further refine our intervention.
Conclusions:
We plan a small pilot test of this intervention in our community to measure its usability and gather more feedback on acceptability and usefulness of the intervention. Given the prevalence of mobile and internet technology, we believe that a mobile-friendly website may be a practical and easily accessible tool for caregivers as they navigate their new roles.
The ‘Chronic Itch Burden Scale’: giving patients with chronic pruritus a voice
