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Uphold CR, Findley KE, Wing KL, Freytes IM, Knauff L, Shorr RI, Rodriguez W, Whittle JC, Beyth RJ. Culturally-Sensitive, Senior-Friendly Health Information for Caregivers of Veterans with Stroke. Federal practitioner : for the health care professionals of the VA, DoD, and PHS. 2010 Sep 1; 27(9):33-36.
BACKGROUND:Stroke-the leading cause of serious, long-term disability in the United States-can cause abrupt, devastating changes not only in the lives of patients but also in the lives of patients' family members. Following a stroke, the patient's family members often must take on new caregiver roles, in which they are expected to manage the stroke survivor's multiple physical and mental issues while at the same time dealing with personal stress and uncertainty. Thus, in order to care properly for stroke survivors, family caregivers need information that covers the full spectrum of the stroke recovery trajectory-from diagnosis to rehabilitation-as well as methods that help caregivers manage their feelings during the recovery period. OBJECTIVES:Objective #1: To evaluate stroke and caregiver related information for web-based adaptation by collecting and analyzing currently available stroke caregiver information by partnering with agencies, such as the American Stroke Association (ASA), conducting a literature review, and searching the MHV Web site and other Web sites. Objective #2: (a) To modify and adapt stroke caregiver materials in a paper and web based format and translate caregiver materials into Spanish as needed, and (b) To develop a web-design on the VA intranet for caregiver materials for pilot testing. Objective #3: To conduct formative evaluation of the stroke caregiver information materials by convening focus groups with providers and individual, face-to-face interviews with informal caregivers of stroke survivors at three sites. Objective #4: To conduct a summative evaluation by conducting an on-line survey of individuals who use our web-based materials. Objective #5: To conduct a promotional campaign to inform providers and administrators in the VA about our web-based information system for stroke caregivers on the VA My HealtheVet. METHODS: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:The last phase of the project will be the summative evaluation that includes an online survey for site users and a telephone survey of health care providers. We also will collect Web site statistics, such as number of page views and fact sheet downloads. Although the funding for the project will end in 2011, the VA Stroke QUERI, in collaboration with My HealtheVet, will continue to maintain the Web site. FINDINGS: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. 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.