Rehabilitation physician Dr. Anne Visser-Meily finds out that deploying something new takes as much perseverance and effort as it takes to develop an innovative tool itself.
Surviving stroke means an altered life to come – for patients as well as for their nearest and dearest. Some cope better with those changes than others. Sometimes the patient does adapt, but a partner gets stressed and depressed.
Professional care about caregivers should commence right after a cerebrovascular accident, says Visser. As a senior researcher at the Medical Rehabilitation Expertise Center Utrecht, she and her colleagues translate research into practicalities such digital decision aids and an exercise-app.
Making sure someone gets active right after stroke is priority number one. “There's much evidence that patients stand better chances for recovery if they start physical exercises as soon as possible. Unfortunately we can't employ a personal trainer for every patient, so we assembled a self-help book, funded by a government grant.
Over 40.000 copies found their way to Dutch patients, mainly via patient-associations. An English translation is on its way. And since this book is meant as a start-up for what should be a longstanding exercise regime, we're now developing an app, so new exercises and video instructions can be added regularly.”
Priority number two: take the family on board. Visser et al promote the Care Giver Strain Index: a 5 minute-questionnaire telling if a caregiver is overburdened. Visser's PhD-thesis in 2005 proved the importance of the private circle of caregivers around a patient. “We've been advocating care which actively involves the family ever since, but it takes much effort to deploy a change – we strive to get it embedded in all levels of education, into the mindset of the next generation.”
The expertise center also developed a downloadable decision aid to determine –on a multidisciplinary level– if a patient is ready to be discharged. “After this aid had proven its worth, we made a follow up-aid for stroke nurses. When patients are out of our sight, other things become important: what's their home situation? How's the patient's state of mind? Do caregivers cope? Our strong network of stroke nurses helped us tremendously; they tested our aid thoroughly and thus made it a better tool. This underlines my motto: from the start of any project, researchers should keep a clear clinical goal in mind.”