A experiência de mães de crianças com cardiopatia congênita: o processo de diagnóstico, tratamento e hospitalização

Abstract

This study aimed to analyze the experience of mothers of children with congenital heart disease along the diagnostic process, treatment and pre- and post-surgery periods of hospitalization. This topic has been addressed in the literature by phenomenological and psychoanalytic approaches and by models of coping. This study explored the difficulties related to symptoms of illness, hospitalization and changes in the roles played by the mother as a member of the family. Analysis of diagnostic process and treatment, and their impact on the daily lives of mothers was based on concepts proposed by Bronfenbrenner. This is a qualitative research in which fifteen mothers aged twenty-one and thirty-eight years were interviewed. Data collection was performed through semi-structured interviews, guided by open questions addressing issues such as fears related to the disease, changes in family and marriage routines. Analysis was conducted from two perspectives: the contents of the interviews and the concepts proposed by the bioecological model of Human Development. The analysis of the interviews’ contents indicates that the mothers’ daily life undergoes changes due to frequent hospitalizations and the limitations imposed by the disease and its treatment. It was observed that the mother is the closest person to the child during diagnosis, treatment and hospitalization, and is glad to be allowed to monitor and keep watch on her child through these procedures. Most mothers reported positive changes in their marriage, and highlighted the support and care offered by the child’s father. From the point of view of the bioecological model, results showed changes at the four environmental levels in which the mothers participate. The microenvironment of the mother is now composed of relationships with health professionals, and staying in the hospital to take care of her child exemplifies a dyad of observation. The joint activity dyad is affected when the mother is deprived of caring for the child in the ICU, but a strengthening of this dyad may occur through the satisfactory development of the child. Primary dyads were composed of mothers and health care professionals. Mothers give up work in order to care of the child, which evidences mesosystemic interferences. Mothers’ daily life is subjected to hospital rules and routines, in addition to requirements of the treatment, with repercussions on their exosystem. At the macrosystemic level, it was observed that mothers only got acquainted with structural conditions of the Brazilian health system after the diagnosis and treatment of their children.