Doctoral defence: Kristi Paron “Child-patient autonomy: interplay between normativity and relationality”

On 16 May at 15:00 Kristi Paron will defend her doctoral thesis “Child-patient autonomy: interplay between normativity and relationality” for obtaining the degree of Doctor of Philosophy (in Sociology).

Supervisors: 
Associate Professor Dagmar Kutsar, University of Tartu

Opponent: 
Associate Professor Daniel Stoecklin, University of Geneva (Switzeland)

Summary
The right to autonomy is one of the most fundamental human rights. In healthcare, patient autonomy is respected by honouring their right to consent. It is an established principle of human rights law and medical ethics that an informed consent must be obtained from a patient before any medical procedure. As adult patients, we assume that we can ask questions form healthcare professionals, discuss our options with them and finally make decisions for ourselves. With child-patients, however, this is often not the case. Research demonstrates that child-patients feel frequently that they are not heard or that their opinion does not matter enough. In this thesis, I explore how international treaties and Estonian law regulate child-patient autonomy, how do medical doctors perceive child-patient autonomy, how do they involve children in discussions and decision-making, and how do they resolve child-parent disagreement. I also analyse how child-patient autonomy functions in everyday medical practice, considering that the child is usually represented by the parent.

The findings of my thesis demonstrate that child-patient autonomy is a relational phenomenon. The child, the parent and the healthcare professional generate a unique triadic relation wherein they produce particular effects on each other and each other’s behaviour through their relational connections. This makes the child’s right and opportunity to be involved in discussions and decision-making dependent on adults’ social skills, as well as the child’s own. The findings of the thesis suggest, however, that parents’ behaviour is of crucial importance in the exercise of child-patient autonomy. The parents often guided their children on how to communicate with the doctor, with some encouraging their child's active involvement in discussions, while others hindered it by doing most of the talking themselves and replying to questions addressed to their children. In addition to the above social aspects, child-patient autonomy is dependent on physical environment in healthcare institutions – the room design and allocation of furniture and seating arrangements may either support or oppress the child’s autonomy and opportunity to be involved in healthcare discussions and decision-making.