Project: Building Support for Children and Families Affected by Stroke
| Acronym | BUILD CARE (Reference Number: EJPRD21-082) |
| Project Topic | Childhood stroke permanently alters the life of children and their families as formal (e.g. hospital, rehabilitation clinic) and informal (e.g. home, neighborhood) care continue 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 childhood stroke. 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 included in the study with the use of semi-structured individual and focus group interviews, participatory methods attuned specifically to involve children, floor plan analysis of healthcare facilities and an international survey. The findings of this project will inform the accommodation, design and delivery of care and improve the everyday life of children and families affected by childhood stroke. Participatory methods and close collaboration with Patient Advocacy Organisations will ensure the accessibility and broad applicability of the project results. |
| Network | EJP RD |
| Call | 3rd EJP RD Joint Transnational Call for Rare Diseases Research Project (JTC 2021) |
Project partner
| Number | Name | Role | Country |
|---|---|---|---|
| 1 | Technische Universität Wien | Coordinator | Austria |
| 2 | Technische Universität Dresden | Partner | Germany |
| 3 | Katholieke Universiteit Leuven | Partner | Belgium |
| 4 | Medical University of Vienna | Partner | Austria |
| 5 | Stiftung Deutsche SchlaganfallHilfe | Observer | Germany |
| 6 | Rarity United | Observer | Belgium |
| 7 | SCHAKI e.V. | Observer | Germany |
| 8 | Schlaganfallhilfe Österreich | Observer | Austria |
| 9 | KU Leuven | Observer | Belgium |
| 10 | KU Leuven | Observer | Belgium |
| 11 | KU Leuven | Observer | Belgium |
| 12 | Münster university Hospital | Observer | Germany |