Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito

Abstract

In this thesis, I approach the concept of Potency, proposed by the philosopher Baruch Espinosa, articulated to the care provided by two families of children diagnosed with a rare congenital illness, one with a microdeletion of the 3q29 gene and the other with a rare lymphatic vascular malformation. The objective of the research was to understand the power involved in the care provided by families of children with a rare congenital illness. The concept of Potency refers to the variable and flexible strength/intensity, which leads the human to persevere in his own being and oscillates according to the affections-affections. Affection refers to the effect of one body on another, affection translates into the mixing of two bodies, a body that acts on another and collects traces of the first. I started from the assumption that people have power to care, which oscillates increasing, decreasing or remaining constant according to the elements and contextual situations that influence actions to build/rebuild care strategies. Based on a qualitative approach and on experience studies that privilege the perspective of people who experience the illness-care process firsthand, the data were produced from January to November 2022 with the reference caregivers in the families (two mothers and a grandmother ), based on comprehensive interviews in a virtual environment, WhatsApp conversations and follow-up on the social network Instagram. Through a careful reading of the empirical material, I searched for the nuclei of meanings by the striking aspects of the experience, following the construction of themes related to the analytical power-care axis, which composed the results. The families' power of care proved to be oscillating due to the internal and external affections of the family that influenced the way they responded to the care demands. I identified people and institutions that families accessed to provide care, as well as what circulated in the flow of social networks. Familist logic permeates public policies and institutions, and making women accountable has proven to reduce power, given the historical, moral and naturally imposed overload that constrains the various ways in which they could fully exercise their lives, restricting them to the destiny of caring. Daily and prolonged care, given the chronicity of the cases, improves knowledge through experience, which overflowed from the particular case to collective care through the activism of mothers in social media, translating into potency for solidary care. Affections revealed themselves in multiple possibilities to influence the power of families of children with rare illnesses, however, they were not determinants in the construction of care, being necessary to consider the force of Desire, the complexity involved in the process of the affection and all the contextual contingency where these phenomena occur. This study is relevant for the practice of Health and Nursing and can contribute to the construction of relational, sensitive, collective and ethical care that considers the child and caregivers in democratic societies that defend/promote health and care as rights.