Children with Stroke: An Investigation of Their Home Environment

Existing research on stroke in adults highlights the role of the built environment during recovery. However, this role has been greatly overlooked in the everyday lives of children with stroke. A stroke in childhood brings substantial changes for affected individuals and their families. Special care and treatments are necessary even many years after the stroke. Although many children recover after a stroke and can lead largely normal lives, cognitive and physical impairments are not uncommon. Typical consequences of childhood stroke include one-sided weakness (hemiparesis), ataxia, seizures, and visuoperceptual deficits. These conditions influence the children's everyday life. For example, home modifications are sometimes necessary to alleviate difficulties, but their implementation and effects on family life remain understudied. This study investigates the role of the built environment in the daily lives of children and families affected by this rare disease, aiming to understand how the built environment hinders and supports the daily lives of children with stroke and their families in their home environment. Using a participatory approach, children serve as experts, offering insights into their home environments. Fifteen German families participated, with guided tours documenting barriers and support measures through floor plans and photos. From an architectural perspective, it was noticeable that 1) large renovation measures were rarely implemented, instead, small aids in daily life were more common, 2) even small everyday aids can significantly improve the lives of these children and their families, 3) children are constantly developing, thus requiring adaptable solutions that can keep up with their growth and changing needs. In summary, this study illuminates the built environment's impact on paediatric stroke survivors, providing insights to inform interventions and enhance the quality of life for the children and their families.