Mudanças, adaptações e superações : a família frente à doença renal crônica infantil

Abstract

The discovery of the need to live with a chronic kidney disease (CKD) is a fact that generates profound psychological and social changes, both in patients with the disease and in those who live with them. In cases where children and adolescents are affected by the disease, the family is faced with the need to reconcile their individual routines with the new needs imposed by the injury. Faced with this scenario, we seek to understand how the diagnosis of a chronic kidney disease and its consequent treatments in children and adolescents affect the family dynamics of these individuals. For this, questionnaires were applied and interviews were conducted with 16 guardians of children / adolescents who, at the time of this research, were undergoing hemodialysis at the Santa Casa de Misericórdia in Belo Horizonte, or who were hosted at CAPE - Casa de Acolhida Padre Eustáquio for the realization of treatment in other hospitals in the capital. The analyzes of the interviews were carried out based on the referentials of the theory of gift and care, using the technique of thematic content analysis, which used themes previously stipulated by the applied questionnaires. These, in turn, were analyzed in conjunction with the interviews and revealed that family functioning was greatly altered with the discovery of the disease and mainly with the need for treatment. The family's routine and activities underwent changes, however, those who felt most were the patient himself and his main caregiver, who, as we could see, were the mothers. They change their daily lives by replacing their work, study and self-care routine with hospital monitoring and health care that needs to be performed in the home environment. In addition, these women aimed to make great efforts to prevent such necessary changes from reaching other family members such as other children and husbands. In this way they focused on a large part of the changes, placing the new tasks imposed on them. Thus, the situations analyzed revealed that society urgently needs to look at such families and realize the need for both institutional and personal support. For this, however, it will be necessary to change the way we perceive care in our society and also how we establish different social roles for people solely on the basis of their biological basis.