Katarzyna Król, GSSR PhD candidate
May 5, 2021, 18:00, Staszic Palace, Nowy Świat 72, Warsaw, room 232
Drawing on ethnographic fieldwork conducted in Poland, in this presentation I will discuss some particular aspects of how the mothers of children diagnosed with rare inborn errors of metabolism understand medical knowledge. Rare inborn errors of metabolism is often a severe, chronic, disabling, and possibly lethal condition that negatively impacts the quality of life of patients and their families. Treatment itself is clinically challenging and it subjects patients, often children, to a dietary regimen for the rest of their lives. The engagement of patients and their caregivers constitutes one of the prerequisites for the challenging lifelong treatment. However, this dietary treatment significantly differs from the „traditional” models of feeding children. Therefore, it is crucial to understand the ways in which mothers, the primary caregivers, understand and negotiate biomedical knowledge and propose additional, other-than-biomedical understandings of possible medical treatments. In order to do so, I will focus mainly on attitudes towards gastrostomy tubes.
Event supported by NAWA Welcome to Poland.