Presence of a knowledgeable informal caregiver is a critical determinant of whether a stroke survivor's health improves and whether the survivor is institutionalized. Unfortunately, many caregivers lack information about caring for stroke survivors and coping mechanisms to avoid caregiver burden. This implementation project addressed the VA/DoD Clinical Practice Guidelines for the Management of Stroke Rehabilitation that urges healthcare providers to educate both stroke survivors and their informal caregivers.
Objective 1: Develop a draft, stroke caregiver RESCUE website, written in English and Spanish, to address gaps in currently available stroke- and caregiver-related information
Objective 2: Create the final website based on formative evaluation findings and usability testing
Object 3: Implement a promotional campaign to increase awareness and usage of the website
Objective 4: Evaluate the website via provider and stakeholder interviews and Webtrends analysis
The CDCynergy model guided our project. Throughout the project, we collaborated with our partners (VA My HealtheVet (MHV) Program, VA Care Coordination Office, VA National Center for Health Promotion and Disease Prevention, American Stroke Association). From reviews of available caregiver educational materials, we developed a draft, low-literacy level website. We refined the website based on findings of the formative evaluation, which consisted of focus group interviews with healthcare providers and qualitative interviews with informal stroke caregivers of Veterans at our study sites (Gainesville, Florida; Milwaukee, Wisconsin; San Juan, Puerto Rico). We conducted usability testing using a questionnaire and "think aloud" cognitive testing. We implemented a multi-prong promotional campaign and conducted a Webtrends analysis to determine website usage.
Based on critical review of available caregiver information on the Internet, in the literature, and in reports and using established health communication guidelines, we developed the draft RESCUE website. RESCUE stands for "Resources and Education for Stroke Caregivers' Understanding and Empowerment." We used the RESCUE theme and branding to illustrate how caregivers in collaboration with their providers act as "lifeguards" and are responsible for well-being of their stroke survivors. The website is written in English and Spanish and consists of 45 fact sheets, a list of resources, newsletters, self-management tools, caregiver testimonials, and a glossary of terms with phonetic spelling.
To evaluate our draft website, we have conducted 3 focus groups with providers at three sites (n=10 in Gainesville; n=10 in San Juan; n=12 in Milwaukee). We conducted 42 face-to-face, in-depth, qualitative interviews with informal caregivers (n =22 in Gainesville; n=13 in San Juan; n=7 in Wisconsin). Feedback from the focus groups and individual interviews was overwhelmingly positive. Healthcare providers stated that the website was comprehensive, understandable and relevant. Suggestions for improvement from providers included the following: 1) add phonetic spelling for the medical terms, 2) include additional information on caregiver resources, and 3) edit sentences to be less "choppy." The informal caregivers recommended inclusion of information on communicating with stroke survivors with aphasia and more information for caregivers who have limited social support. Based on this formative evaluation, we refined the website.
We conducted a usability study with a sample of 8 providers (3 English-speaking and 5 Spanish-speaking) and 7 female, informal stroke caregivers (4 English-speaking and 3 Spanish-speaking). All participants agreed that the website had a clear purpose, was attractive, inviting, informative, understandable, and had a good balance of text and graphics. Whereas the informal caregivers had no recommendations for improvement, the providers had suggestions for improving the navigability, which we used to further refine the website. The final website was reviewed by our partners and clinical experts from multiple disciplines. We obtained approval of the website from the Clinical Advisory Board of VA MHV and the health education departments at each study site. The English version and the Spanish version of the website were launched in November 2010 and May 2011, respectively. The RECUE website is linked with the VA MHV website and the VA Caregiver Support website.
We implemented a multi-prong promotional campaign. Prior to launching the website, we emailed monthly/bimonthly newsletters to VA providers to inform them about the upcoming website and to provide them with tips for educating caregivers. We promoted the website in VA publications (e.g., VAnguard and VACO Daily News) and the American Stroke Association's publication, Connections. At ten, pre-selected medical centers throughout the VA that had high numbers of Veterans with stroke, local staff members promoted our website at informational fairs by distributing promotional items (e.g.,trinkets, flyers, banners) that included our "life preserver" branding and the website address (http://www.rorc.research.va.gov/rescue/). We also used eBlast emails and announcements on VA/VHA Facebook and Twitter. At the study sites, we conducted additional promotion activities (e.g., presentations at VA Senior Resource Day, community senior centers, VA support groups and clinics). Our last promotional event was a national seminar for the VHA VA Educators Integrated network through LIVE meeting.
Our summative evaluation consisted of qualitative, telephonic interviews with 18 VA healthcare providers, feedback from our partners, and Webtrends analysis. The providers and partners confirmed that the RESCUE website was fulfilling an important niche in the VA for an easy-to-read and comprehensive website for stroke caregivers. Webtrends analysis of the RESCUE site page views determined that from October 2010-December 2012, views of RESCUE web pages (218,529 views) comprised 45% of all traffic to the parent website (www.rorc.research.va.gov). A Google search for "stroke caregiving" lists the RESCUE website in the #4 position, and a search for "stroke caregiving resources" lists the RESCUE website in the #1 position.
Our project provides informal caregivers with low literacy-level, informational materials to improve the quality of their lives and the rehabilitation of their Veterans with stroke. The RESCUE website is an easily accessible VA patient and family education resource for healthcare providers in their clinical practices. The Spanish-language version of the website addresses the need for culturally-relevant information for caregivers who often do not speak English. The project also provides a model for how researchers can use health marketing concepts to promote their research products and findings. The RESCUE website will be further evaluated in two funded research projects.
- 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.
- Uphold CR, Findley KE, Knauff LE, Nouripour S, Wing KL, Anderson SA, Edwards H, Freytes IM, Hanjian JM, Wilson DL. A Lifeline for Stroke Caregivers: Information and Resources to Keep Your Head Above Water. Washington, DC: Government Printing Office; 2010. 264 p.
- Uphold CR. Resources & Education for Stroke Caregivers' Understanding & Empowerment (RESCUE) Website: A tool for improving skills and knowledge of caregivers of Veterans with Stroke. [Cyberseminar]. 2014 Nov 4.
- Uphold CR. On-Line Resources for Providers and Stroke Caregivers Using the RESCUE Website. [Cyberseminar]. 2012 Dec 11.
- Freytes IM, Santos LM. Functional, Health, and Rehabilitation Outcomes in Hispanic Veterans with TBI: A Systematic Literature Review. Poster session presented at: Hispanic-Serving Health Professions Schools Professional Development Workshop; 2015 Jun 29; Washington, DC.
- Uphold CR. Interventions to reduce burden of caregivers of Veterans post-stroke. Paper presented at: University of Florida College of Medicine Institute on Aging Department of Aging and Geriatric Research / VA Geriatric Research, Education, and Clinical Center Clinical Translational Aging Research Seminar Series; 2015 Jan 12; Gainesville, FL.
- Uphold CR, Findley KE, Wing KL, Freytes IM, Hanjian JM, Midolo JP, Knauff LE, Rodriguez W, Whittle JC. Improving Stroke Caregiver Outcomes: Evaluation of the RESCUE Website. Poster session presented at: VA HSR&D National Meeting; 2012 Jul 18; National Harbor, MD.
- Amaefule E, Rodriguez-Yu V, Uphold CR. Two Unique Educational Programs for Improving the Knowledge and Skills of Veterans with Stroke and their Caregivers. Poster session presented at: Southern New England Rehabilitation Center Annual Rehabilitation Conference for Professionals; 2012 Jun 20; Atlanta, GA.
- Freytes IM, Uphold CR. RESCUE Website en Español for Caregivers of Veterans Post Stroke. Paper presented at: VA Caribbean Healthcare System Annual Research Day; 2012 Apr 25; San Juan, Puerto Rico.
- Uphold CR. Translating Evidence into Practice to Improve Outcomes of Stroke Caregivers Through Health Communications. Paper presented at: University of Maryland School of Nursing / VA Maryland Health Care System Annual Evidence-Based Practice Conference; 2011 Mar 31; Baltimore, MD.
- 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.
- Wing KL, Hanjian JM, Findley KE, Knauff LE, Edwards H, Lee B, Uphold CR. Implementing a Promotional Campaign for the “Resources and Education for Stroke Caregivers’ Understanding and Empowerment (RESCUE)” Web Site. Poster session presented at: VA Research in the Southeast RFPs to Outcomes: Translating Research to Practice Conference; 2010 Jul 21; Orlando, FL.
- Findley KE, Anderson SA, Knauff L, 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 Office of Patient Care Services National Caregiver Support Conference; 2010 Jul 13; Crystal City, VA.
- Uphold CR, Freytes IM, Knauff L, Wing KL, Anderson SA. Improving community reintegration of OEF/OIF Veterans and families living in Puerto Rico through Printed and Web-based education. Poster session presented at: VA Office of Patient Care Services National Caregiver Support Conference; 2010 Jul 13; Crystal City, VA.
- Kunik ME, Uphold CR. Translating caregiving research into clinical reality: Lesson from the VA experience. Poster session presented at: AcademyHealth Annual Research Meeting; 2010 Jun 27; Boston, MA.
- Uphold CR, Findley KE, Freytes IM, Knauff L, Wing KL, Rodriguez W. Printed and Web-Based Education For Caregivers Of Stroke Survivors. Poster session presented at: American Geriatrics Society Annual Meeting; 2010 May 14; Orlando, FL.
- Hanjian JM, Wing KL, Knauff LE, Findley KE, Freytes IM, Uphold CR. Implementing a Promotional Campaign for a Stroke Caregiving Web Site. Paper presented at: National Institutes of Health Conference on the Science of Dissemination and Implementation: Methods and Measurement; 2010 Mar 3; Washington, DC.
- Uphold CR. Health Literacy and Patient Education. Poster session presented at: Molloy College Center for Nursing Research and Scholarly Practice Reception and Session Meeting; 2009 Nov 11; Rockville, MD.
Aging, Older Veterans' Health and Care, Other Conditions
Technology Development and Assessment
Caregivers – not professionals, Education (patient), Stroke