Project Number SDP 06-327 funded by VA HS&RD Quality Enhancement Research Initiative (QUERI).
May 1, 2008 - May 31, 2011

Project Background

Stroke survivors and their caregivers often do not have the information necessary to manage the recovery process at home. Presence of a competent and knowledgeable caregiver is a critical determinant of whether a stroke survivor's mental and physical health improves and whether the survivor is institutionalized or remains at home or in the community. Unfortunately, many stroke caregivers lack basic information about strokes, strategies to care for stroke survivors, and ways to prevent complications and future strokes. In addition, caregivers often have no understanding of coping mechanisms to avoid caregiver burden. This implementation project addresses the VA/DoD Clinical Practice Guidelines for the Management of Stroke Rehabilitation recommendations for the need to increase guideline compliance in the area of family education. We will be using Step 4 of the Classic Six-Step QUERI Process which involves the development and implementation of programs to promote best practices.

Project Objectives

Objective 1: Evaluate stroke and caregiver related information for web-based adaptation. Objective 2: Develop stroke caregiver materials based on identified gaps in currently available information; and prepare materials for pilot testing. Objective 3: Conduct formative evaluation of stroke caregiver materials; revise materials based on evaluation findings and implement promotion campaign. Objective 4: Post materials on the MHV website, conduct summative evaluation, and implement final revisions

Project Methods

Objective 1: Evaluate stroke and caregiver related information for web-based adaptation. 1i. We will collect and analyze currently available stroke caregiver information on the MHV website and other websites such as the American Stroke Association (ASA) to identify gaps. Objective 2: Develop stroke caregiver materials based on identified gaps in currently available information; and prepare materials for pilot testing. 2i. We will modify and adapt stroke caregiver materials based on identified gaps in currently available information; translate caregiver materials into Spanish as needed. 2ii. We will develop web-design on VA intranet for caregiver materials for pilot testing. Objective 3: Conduct formative evaluation of stroke caregiver materials; revise materials based on evaluation findings and implement promotion campaign. 3i. We will conduct caregiver and clinician focus groups to evaluate content and usability of materials. 3ii. We will revise content of materials and web-design based on focus group data. 3iii. We will conduct promotional campaign activities at three main study sites and ten VA health facilities with highest stroke incidence. Objective 4: Post materials on the MHV website, conduct summative evaluation, and implement final revisions 4i. We will Place caregiver materials on the MHV website (Internet). 4ii.We will conduct summative evaluation of materials using surveys and website statistics. 4iii.We will Implement final revisions to web-design and content for full dissemination on MHV website.

Project Findings

The start date for this project was 5/1/2008. All of the team members have been hired and trained. We have collected and analyzed currently available stroke caregiver information on the MHV website and other websites such as the American Stroke Association (ASA) to identify gaps. We have begun the next phase, which is to modify and adapt stroke caregiver materials. As of 5/15/09, we are in the final stages of writing the caregiver materials, translating the materials into Spanish, and developing the Web Site. We are beginning the recruitment and enrollment of our focus group and individual interview participants. We have developed and are in the process of evaluating a comprehensive promotional campaign. The campaign consists of monthly newsletters about key caregiver issues. As of 5/3/10, we have developed the draft web site and implemented a promotional campaign to increase awareness of the future website. We have circulated on-line "RESCUE" newsletters to healthcare professionals as part of this promotional campaign. To evaluate our draft web site, we have conducted 3 focus groups with healthcare providers at each of our study sites (n=10 in Gainesville, Florida; n=10 in San Juan, Puerto Rico; n=12 in Milwaukee, Wisconsin). We have also conducted 42 face-to-face indepth qualitative interviews with 42 informal caregivers (n =22 in Gainesville, FL; 13 in San Juan Puerto Rico; 7 in Milwaukee, Wisconsin). Feedback from participants in the focus groups and individual interviews has been overwhelming positive. Professionals state that the website and printed materials are comprehensive, understandable and provide relevant content. Suggestions from the professionals for improvement include the following: 1) add phonetics for the medical terms on the fact sheets, 2) add more information on available resources for caregivers, and 3) improve the structure of sentences that are short and choppy. The informal caregivers suggested that the website and printed materials should include more information on how to communicate with an aphasic stroke survivor and how to care for stroke survivors when there is no available social support network.

Project Status

Project work is ongoing. The project's promotional campaign has been more fully developed and a monthly Newsletter has been sent to providers since March 2009. 5/3/10: Project is ongoing. We will begin the usability study phase of the project this summer. We will be promoting the website at stroke-related events in the fall 2010.

Project Impact

This project will enhance the lives of veterans and their families, and extend the knowledge of how to change behavior and improve the systems that care for veterans. First, veterans and families will have easily accessible, readable, accurate, and culturally relevant information materials that will enhance the quality of their lives by helping them cope with the devastating aftermath of strokes. Second, the study aims to increase the awareness and skills of caregivers and health care providers in using MHV web-based information materials on stroke, thereby changing behavior and ultimately improving the system of healthcare (i.e., increased utilization of MHV). It is also recognized that the use of the CDCynergy model provides the study with a framework used to conceptualize and design the research and to aid in the implementation of the web-based informational materials. The promotional campaign has had an impact. There has been a marked increase in the number of "hits" to the RORC Web Site since the promotional newsletters have been electronically transmitted. 5/3/10: The draft website has received positive evaluations and should be a good resource for both informal and formal stroke caregivers.