Approximately 80,000 veterans receiving health care in the Veterans Health Affairs (VHA) are stroke survivors and it is estimated that 9,000-11,000 veterans are hospitalized each year with a new stroke. Close to 80 percent of stroke survivors are discharged home with the burden of continuing care and recovery shifting to informal caregivers who may have little or no preparation or training in stroke caregiving. Informal caregivers face difficulties, such as uncertainty, anxiety, depression, poor health, and poor quality of life, due to the sudden onset of stroke. Stroke caregivers often do not have the information needed to manage recovery at home. Research also indicates that stroke caregivers are dissatisfied with information provided. Caregiver information is even more critical in Puerto Rico because the Caribbean VA Health System has a high rate of stroke in VHA. This study proposed to: (1) assess content and usability of caregiver guidebooks for caregivers of veterans post stroke; and (2) define dissemination strategies and evaluate clinical usefulness with stroke caregivers.
This study proposed to: (1) assess content and usability of caregiver guidebooks for caregivers of veterans post stroke; and (2) define dissemination strategies and evaluate clinical usefulness with stroke caregivers.
This study used a mixed-methodology (focus groups/phone interviews, an expert panel and surveys) in a multi-site study (Puerto Rico; Indianapolis, IN; Gainesville FL; and Houston, TX) to collect summative and formative data to evaluate the usefulness of the guidebook and to determine the most effective means of distributing the guidebooks to caregivers of stroke survivors. Clinicians from various Veterans Affairs Hospitals and the Stroke QUERI reviewed the caregiver guidebook for content and format, providing feedback and completing an evaluation survey. Along with the clinician review, informal caregivers of veterans post stroke were recruited to participate in 2 focus groups to review the guidebook. These focus groups took place in Indianapolis, IN and San Juan, Puerto Rico and their feedback was used to refine the caregiver guidebook. Dissemination plans were to be developed based on recommendations of experts.
The quantitative data received from the surveys indicated broad support and approval for the guidebook produced for this project. Both the intent and execution were in large part lauded, with careful critical suggestions detailing areas to be improved. Comments were provided for working and ergonomic improvements. Focus group data resulted in changes including information on diabetes and stroke, behavior management, blood pressure management, managing stress by caregiver, and additions to resources section. The information gleaned from these comments and surveys was taken into careful consideration and added to the data received from the focus group data. Caregiver guidebooks are completed and have been printed. Dissemination to VA Medical Centers across the system is underway.
Nurses working on inpatients units and in homecare will have a research based tool to educate caregivers of veterans post stroke.
Publications/Products: Findings supported a new grant which was funded. Caregiver guidebooks completed and printed. Copies attached.
None at this time.
Caregivers – not professionals