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Room for Vulnerability: Children’s Everyday Practices and the Design of Cancer Care Environments
Book - Dissertation
Children affected by cancer often require repeated hospitalisations. As visits may extend over several months, the hospital becomes part of these children's and their families' everyday lives. Since the turn of the 21st century the impact of the material hospital environment on children's health and well-being receives heightened attention from researchers across various disciplines. The context of childhood cancer amplifies young people's 'double vulnerability': being children (physically immature, lacking life experience and knowledge) and being ill. As a result, young people affected by cancer are less considered as direct research participants.This PhD project set out to put the experiences of these young people (between 5 and 18 years old) at the centre of attention. It focuses on their complex interactions with the material hospital environment with the aim to inform its (re)design.The project seeks to do justice to the complexity of this matter by fusing theoretical and empirical work in a transdisciplinary way. Informed by the socio-material turn in social sciences it starts from the idea that people experience space as part of it. Concepts and insights are brought together from childhood studies to bring into clear view children in all their differences as active constituents of the world; from scholarship in anthropology and philosophy in order to challenge understandings of vulnerability and uncertainty as lack or deficiency; from theories on materiality which understand the social and the material as closely intertwined and constitutively entangled; and from design research to make noticeable the spatial and material surroundings of our social lives. Participant observation and video methods are used to investigate and present everyday practices. Turning to things - an IV-stand and an aquarium - as empirical focus allowed noticing how diverse and complex these everyday practices are, and how artefacts are involved in the day-care and paediatric oncology ward where the fieldwork took place. By interweaving different lines of inquiry, the project exemplifies how this fusing of theoretical and empirical work has the ability to advance both social sciences and design research and invites to adopt a nuanced way a seeing.Young people affected by cancer tend to be considered as vulnerable or passive, subjected to the reality of illness and of the hospital. The project shows how they are also 'everyday designers' of the world, even in a highly structured environment like a child oncology ward. While most existing research on the material hospital environment focuses on people's experiences of or affective relationships with it, the children we worked with did not only move through a hospital building, but engaged with it through the many activities they are involved in. These activities continue to shape and are shaped by the material environment. From this practice theory perspective, most of the time children and adults participate in practices together. Considering children's everyday practices in conjunction with, and as similar to, adults' is a way to depoliticize age and go against the abundant use of age associations as explanatory in research, practice and policy. Such an approach might be valuable to study and design environments where people of all ages and with different abilities participate in practices, such as museums, hospitals, public parks and facilities, streets, shops.An important thread throughout the project is that of dialogue: between people, between research disciplines and traditions, and with things. As exemplified in our dialogue with the hospital Research Ethics Committee, we have learned to see the potential of exploring and engaging with differences as a way to establish a shared space of reflection. Further research could look into how professional designers can design in ways that acknowledge children as everyday designers; search for more cross-pollination between research that focusses on children's care environments and childhood research in other contexts; and further explore the potential of dialogue in education, research and practice.