Experiência de cuidado pelo homem na vivência familiar do adoecimento crônico

Abstract

This study is linked to the matrix research "The Health and Judicial Power Institutions as mediators in the implementation of the national legal system in health: analysis of the therapeutic itineraries of people/families in the SUS(Unified Health System)/MT”, aiming to understand how the man takes care of his family in a chronic illness situation; and the rearrangements in the distribution of care in this situation. It is a situational study about three men and their families, Baltasar, Assis, Olavo, that experience the chronic situation of illness in children, adolescents and young people, being, respectively, Adrenoleukodystrophy, Sickle cell anemia, ureteral stenosis concomitant with cancer. The corpus of analysis was formed by part of the collection from the data bank of the matrix research. This collection consisted of research diaries of each family with an in-depth interview and field observations; we also used a description of a film about Baltasar‟s experience. For the data analysis the narratives were read exhaustively and two meaning axes were found, being: a) “Rearrangements in the sharing of the care by the man”, that helped to understand the sharing of the care by the man, forming family rearrangements for the children‟s care; b) “How the man cares”, that addressed the relational dimension of care, showing the importance of family ties and the constitution of the care relationships. The results showed that the men took care of their sick children sharing the family care to them, mainly with their wives. This sharing occurred through the readiness to take care, by taking turns in the care with other family members, by the division and negotiation of the care. The sharing of care presupposes that the men established care relationships, shown in the way they care, that show the share actions, the attitude and the how care is given in the family. The family ties were providential in the construction of the care relationships, having as central elements the affection, the taking of responsibility, the trust, the reciprocity and the moral duty of caring for the children. These elements led us to consider that the care by the man overtakes the level of actions, changing into attitudes that are materialized in situations particular to getting ill. We highlight the situational analysis as an important methodological approach, which allowed us to understand the daily life experiences, the different situations and the meanings that the people and their families give to the illness and care; as well as the data bank as a strong methodology in qualitative research. The study showed the need to rethink the place of the man in the family care, in order to redirect our health practices. The health professionals must recognize the care that the man gives, as well as his own demands, so that he will receive support in the care within his family.