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Findley KE, Anderson SA, Knauff LE, Wing KL, Hanjian JM, Freytes IM, Shorr RI, Beyth RJ, Uphold CR. Developing Culturally-Sensitive, Low-Literate and Senior-Friendly Informational Materials for Caregivers of Veterans with Stroke. Poster session presented at: VA Research in the Southeast RFPs to Outcomes: Translating Research to Practice Conference; 2010 Jul 21; Orlando, FL.
Stroke is a major cause of disability and a leading cause of outpatient medical utilization. Non-paid caregivers, particularly family members, are the major sources of support for stroke survivors. Unlike other chronic diseases, strokes occur suddenly and family members have little time to prepare and adjust to their new roles. Consequently, national practice guidelines urge healthcare providers to educate and support not only stroke survivors but also their family members who manage the survivors' care. Objectives: To develop culturally sensitive, low-literate and senior-friendly Web-based and print versions of educational materials for informal caregivers of Veteran stroke survivors. An analysis of existing stroke caregiving information available on the Internet was performed to identify the informational needs of stroke caregivers. Based on the identified needs, 44 facts sheets on stroke and stroke caregiving related topics were developed (in English and in Spanish). Established guidelines for the creation of low-literate and senior-friendly patient education were followed, and special attention was paid to ensure that the fact sheets were culturally sensitive to the Hispanic/Latino population served by the VA. Contents of the developed fact sheets were used to populate the pages of the RESCUE (Resources and Education for Stroke Caregivers' Understanding and Empowerment) Web Site (draft), as well as downloadable, printer-friendly documents (Section 508 compliant PDFs). Focus groups comprised of VA providers were conducted at the three study sites: Gainesville, FL (n = 10), Milwaukee, WI (n = 12) and San Juan, Puerto Rico (n = 10). Focus group participants provided feedback about the fact sheet topics and information, and the visual appearance of the draft Web site and printable fact sheets. To obtain feedback from the caregiver's perspective, individual interviews (n = 42) were conducted with informal caregivers across the three study sites. Status: We are currently in the last segment of our study. The RESCUE website has been launched in both English and Spanish. We are currently in the process of conducting a usability study with providers and caregivers for the RESCUE website in Spanish. Providers and informal caregivers voiced primarily positive statements about the Web-based and printed informational materials. The fact sheets were noted to be attractive, easy-to-read, brief, and well organized. Feedback for the Web site confirmed that the site was easy-to-navigate and professional in appearance. Suggestions from providers for improvement focused on layout and formatting of the Web site, and included requests for additional content about shoulder problems, transferring patients, and behavioral problems following stroke. Suggestions from caregivers focused on including more content about how to deal with behavioral and physical changes after stroke, and how to address the handling of finances. Revisions were made to the fact sheets and draft Web site based on the feedback obtained from focus group participants. Final revisions and enhancements will be made to the Web site following usability testing and in-depth, face-to-face interviews with 4-6 informal caregivers, scheduled for the Summer of 2010. The Web site (http://www.rorc.research.va.gov/rescue), and print versions of the fact sheets are scheduled for release in the Fall of 2010. A companion book of the fact sheets (for caregivers without Internet access/computer skills) should be available in late 2010. Impact: Providing patient/family education materials in an easy-to-read, easy-to-understand, and visually appealing format leads to greater acceptance and use of the materials. Ensuring that information for informal caregivers is culturally-sensitive and age-appropriate is a positive strategy to inform and empower the caregiver, and ultimately to improve the outcomes of the Veteran stroke survivor they care for.
