Author:

Keywords:

cancer care, children, ethics, vulnerability

Abstract:

Research with, on and about children and youth in the context of illness and care in general is connected to adult protection, risk and the idea of vulnerability. Our research considers the notion of vulnerability from two different perspectives. On the one hand, a critical perspective as alternative to viewing vulnerability as a lack. Constructing children as vulnerable research subjects results in limited access to and knowledge of their own perspectives – rendering children silent. On the other hand, relating vulnerability to an existential/inherent human characteristic, we recognise being able to be vulnerable, without being reduced to it, as an important need. Linking the notion of vulnerability to a socio-material perspective draws attention to how practices constitute the emotional experience of space and offers the possibility to gain insights into how/whether these young people experience vulnerability. This paper reflects on how these two perspectives surface in our methodology to research spatial experiences of the built care environment with children and youth affected by cancer. By way of example we discuss the process of gaining approval for this methodology from a hospital’s ethical committee. This reflection may be relevant for anyone doing research with children also outside of care environments.