Room for vulnerability
This project investigates the connection between the experience of children affected by cancer and the design of cancer care environments. In diverse disciplines attention grows for the built care environment and its impact on the quality of care, quality of life, and wellbeing of people affected by cancer. The perspective and experiences of children and youth affected by cancer largely remain underexposed so far, even though they are the main actors. Therefore the project seeks to provide designers and others responsible for the built care environment with insights and tools to take into account the lived experiences of children and youth affected by cancer. To this end, it will investigate how these young people experience the built care environment, how their experience can inspire the development of new and existing care contexts, and how the notion of vulnerability can be challenged and used in the context of care architecture and design. Theoretically the project will build on the anthropology of vulnerability, childhood studies, and recent theories on materiality/spatiality; methodologically, it will combine an ethnographic approach with creative participatory methods. The project is expected to contribute to acknowledging and valuing of experiences and insights of children and youth in architecture in general, also outside the context of cancer care.
publications / presentations
- Tutenel P., Ramaekers S., Heylighen A. (2019). Understanding children’s spatiality in cancer care environments: Untangling everyday practices around an IV-stand in a paediatric day-care ward.Health and Place, 60, Nov 2019, 102211.
Tutenel P., Ramaekers S., Heylighen A. (2019). Conversations between procedural and situated ethics: Learning from video research with children in a cancer care ward. The Design Journal, 22 (sup1), 641-654.
- Tutenel, P., Heylighen, A. (2018). “On the edge of ethics or bridging the gap?”: Reflections from video research on how children affected by cancer experience the built care environmentBetween Edges and Margins: Innovative methods in the study of deviance, Ghent, 13-14 September 2018.
Tutenel, P., Ramaekers, S., Heylighen, A. (2018).Getting there: Research on spatial experience of the built care environment with children and young people affected by cancer
- SANT/FAS Conference 2018: Vulnerabilities. Uppsala, 19-21 April 2018.
- Tutenel P., Ramaekers S., Heylighen A. (2017). Ruimte voor kwetsbaarheid. Presented at the "Over lief en leed na kanker" - Congres in de psychosociale oncologie, Mechelen, 11 Dec 2017.
- Funding Agency: Kom op tegen Kanker & Department of Architecture
- PhD candidate: Piet Tutenel
- Supervisors: prof. Ann Heylighen (Research[x]Design), prof. Stefan Ramaekers (Education, Culture and Society)