Childhood stroke alters the life of children and their families as care continues for many years after stroke onset. We aim to, for the first time, investigate the role of the built environment in the everyday life of children and families affected by this rare disease. We will examine both the informal (i.e. home, neighbourhood, school) and formal (i.e. hospital, rehabilitation clinic, outpatient clinic) care environments. Our main research objectives are (1) to gain a profound understanding of how the built environment hinders and supports the everyday life of children with stroke and their families; (2) to investigate how healthcare facilities are designed and adapted in use to care for those affected by childhood stroke; (3) to examine the families’ direct and indirect financial burden of informal and formal care; and (4) to identify how the (re)design of built (health)care environments can be adequately informed about the experiences of those affected by childhood stroke. Children and their families, healthcare professionals, and design practitioners will be involved in the project through individual and focus group interviews (in Austria, Belgium and Germany). Participatory methods will specifically involve children, and floor plan analysis of healthcare facilities will be performed.

Based on the insights gained, design recommendations will be developed and discussed with participating families, patient advocacy organisations, healthcare professionals, and design practitioners. The recommendations for home modifications will be practical and directly beneficial to families of children after a stroke. The recommendations for healthcare facilities will be targeted at design practitioners and healthcare professionals. All developed recommendations will be shared with all interested parties in an online ‘Knowledge-sharing Platform’. Furthermore, the detailed information on the financial burden of the families affected by childhood stroke will be shared with patient advocacy organisations for further use (e.g. negotiations with healthcare providers, health insurances, comparisons between countries). The project results will inform the accommodation, design and delivery of care and improve the everyday life of children and families affected by childhood stroke.