Abstract
Hemorrhagic stroke accounts for half of incident strokes in children yet remains understudied. Clinical and research teams assessing recovery from pediatric hemorrhagic stroke are limited because commonly used outcome measures may not be meaningful to the care team, educators, and foremost the child and family. The current paper serves as a model for bringing together multiple disciplines for shared purposes of better assessing child recovery and development after hemorrhagic stroke over time, advocating for child- and family-centered care, and facilitating discourse in the community of those caring for children with pediatric hemorrhagic stroke. The purpose of this work is to describe our guiding principles and the process of our team’s development of a toolkit that emphasizes inclusion of the patient and family perspective of recovery in the home, school, and community contexts. We provide the toolkit and an example of specific outcome measures selected to address unique aims of a research project. The toolkit is intended to be a living platform for further evolution of outcome measures for pediatric hemorrhagic stroke. As such, we hope it will be a dynamic document that serves the ongoing and future clinical and research needs of the multidisciplinary professional teams providing holistic care after a pediatric hemorrhagic stroke.
Original language | American English |
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Pages (from-to) | 76-130 |
Journal | Pediatric Stroke |
State | Published - 2024 |