Boosting education for stroke survivors and their caregivers
Stroke is a leading cause of death in the United States. According to the Centers for Disease Control and Prevention, someone in the United States has a
stroke every 40 seconds, and every four minutes someone dies of stroke.i Although stroke risk increases
with age, strokes can and do occur at any age. Nearly a quarter of strokes occur in people under the age of 65. Today, approximately 6.2 million people are
living with the consequences of stroke.
While many people survive their first stroke, stroke survivors and their caregivers often don't have the information they need to manage their recovery
process at home. A competent and knowledgeable caregiver is critical in determining whether a stroke survivor's mental and physical health improves, and
whether the survivor or a stroke is institutionalized or can remain at home in his or her community.
Because strokes occur suddenly, survivors and caregivers need extensive education to prevent second strokes and to manage the aftermath of stroke. In a
presentation given at the 2012 New Horizons in Rehabilitation Conference, a team of VA nurses evaluated two stroke education programs developed by VA, one
administered in person and one Web-based—and found that both were important new tools in helping Veterans with stroke and their caregivers to manage the
disease.ii
"Education is a vital aspect of care and management of debilitating illnesses, especially stroke," says Constance R. Uphold, PhD, a researcher with the VA
North Florida/South Georgia Veterans Health System and an associate professor at the University of Florida, one of the study's co-presenters.
One of the programs the team evaluated was an in-person educational series developed by the VA Puget Sound Health Care System, based in Seattle, Wash. The
hospital's interdisciplinary stroke team developed an educational series to provide Veterans and caregivers with information on understanding, preventing
and managing stroke.
Participants meet twice a month and listen to lectures on topics including understanding stroke, functional recovery, and communication and cognition.
After the lecture, those in attendance hold interactive discussions with the hospital's stroke team and also discuss appropriate support for each
individual participant.
After every session, evaluation forms are passed out to attendees. The team reported that the reviews from patients, family members, and caregivers have
been "excellent," and that topics including sex and sexuality, recreation, transportation, and exercises that can prevent additional strokes have been
added based on participants' requests.
The second program uses evidence-based best practices as content for an easy-to-read, senior-friendly VA website that's available in both English and
Spanish. The website, www.rorc.research.va.gov/rescue, describes itself as a lifeline to keep stroke
caregivers' "heads above water." The website is known as RESCUE, an acronym for Resources and Education for Stroke Caregivers' Understanding and
Empowerment. Before going online, the website was pretested in focus groups with providers, through in-person interviews with caregivers, and by an expert
panel of clinicians.
The site consists of a library of 45 factsheets, a problem-solving learning module, self-help tools, a list of resources, patient education newsletters,
and a glossary with phonetic spellings. The presentation team conducted online surveys with health care providers, and a usability study with seven
caregivers and eight providers.
"Health care providers told us that the website is informative, comprehensive, and up-to-date," says Uphold. "And our usability study revealed that the
website was attractive, easy to navigate, and understandable." The team also reported that the website has already received more than 6,800 visits—and that
usage has increased significantly since the site's launch.
"Different educational methods are effective in improved stroke-related outcomes," she continues. "The in-person education series provides social support
and a forum for survivors and caregivers to learn from each other. And the RESCUE website provides a breadth of stroke-related information, and reaches a
large number of persons."
VA estimates that more than 15,000 Veterans are hospitalized for stroke every year. Of these stroke survivors, 40 percent are left with moderate functional
impairments and 15 to 30 percent are severely disabled. iii The Veterans Health Administration and VA's
HSR&D's Stroke Enhancement Research Initiative use cross-cutting methodological approaches including healthcare system redesign, information technology
interventions and self-management strategies to reduce the risk of stroke and to foster system, provider, and patient processes that result in the best
possible outcomes for Veterans with stroke.