Sentidos e experiências dos familiares no cuidado de crianças hospitalizadas em condições crônicas complexas

Abstract

Complex Chronic Conditions (CCC) in childhood define a subgroup within the broad spectrum of chronic diseases, in which the technological scenario is predominant to guarantee patient survival. For the reason that these are hospitalized children who are also dependent on human care for their own survival, the family members’ role is essential in daily hospital life. Thus, the general objective of this dissertation is to understand the family members’ experience, the main caregivers of CCC children hospitalized, with regard to care relationships. Given the complexity of the topic, the results were organized into four qualitative studies, three empirical studies and one test model. The first study sought to understand the experiences of family members in the daily care provided to children hospitalized in CCC, while the second study focused on understanding the specifics of care relationships and communications established between family members and children. The third study, in turn, was guided by the understanding, from the perspective of the family members, of the care provided by health professionals to children hospitalized in CCC and to the family itself, more specifically, on how the hospital routine is established, the professional practices and institutional processes for family members. Regarding study four, organized in a study model, the central idea of the text turned to the discussion about the possibility of de-hospitalization of these children, also considering the perspective of family members. The articles were guided by similar methodologies, with regard to the use of semi-structured interviews as a data collection instrument and Thematic Analysis as a technique for analyzing the collected material. The results were interpreted and discussed based on the psychoanalytic theoretical framework, with emphasis on the Theory of Human Maturity, by D. W. Winnicott, in dialogue with current authors who investigate the context of CCC and the role of family members in care. In general, the results of the studies converged, as they indicated the importance of the team adopting a facilitating posture in the mediation of care between the family and the child, in order to help family members to appropriate care and parenting, respecting their conditions dependence and their necessity for autonomy. Study two presented, more directly, the subjective dimension that permeates the relationship of family members with their children, establishing a very specific emotional involvement and communication, within the possibilities that each child has of interaction with their parents. Such subjective and emotional reality ends up being neglected by the team and even invalidated, as identified in studies two and three. Conflicts arising from a poorly humanized professional practice affect the reliability of family members in the care they receive within the hospital, which generates insecurity and distrust in the team's work and affects the family decision regarding the de-hospitalization of these patients, as discussed in the study. Thus, the studies are connected to each other, with complementary discussions, in order to provide an overview of the reality and experiences of these family members as a whole.