Experiência de ser mãe de uma criança com epidermólise bolhosa: estudo de caso na perspectiva da análise do discurso

Abstract

Epidermolysis Bullosa is a rare genetic and hereditary disease, which causes the formation of blisters on the skin and mucous membranes, which appear spontaneously or after insignificant trauma. The social stigma and the changes that multiply in the skin, as well as the low life expectancy, are limiting factors. EB causes pain and affects the physical and emotional daily lives of patients. It is important to remember that it is not just the patient with EB who demands care - despite the need for this to be something concrete - a different look is also needed for the basic human needs of the family member who accompanies him. Thus, the research problem arises: there is a silent emotional exhaustion of the relatives of children with EB - who take care of the patients - considering that they often need to modify the routine of their lives to dedicate themselves exclusively to the child with this grievance. It is an indisputably difficult activity in many ways, these being physical, financial and emotional. Thus, this work aims to understand the daily care of a mother of a child with EB – who assume their care, in relation to the infants' daily lives. It is also sought to understand the relationship of this family member with their daily lives, their emotional issues and their perspectives. A holistic approach was adopted, considering that care goes far beyond procedures, but encompasses the emotional, cultural and social aspects. This is a case study based on Discourse Analysis (DA). Qualitative research was chosen as it was considered the most appropriate modality for studying concepts and motivations, which is the objective of this research. It is concluded that the analysis of five categories reveals: Impact and surprise; Difficulty in diagnosis; Feelings towards the child; The magnitude of the problem and socialization. The mother experienced a feeling of collapse before her son's diagnosis and the care routine, especially dressing changes, entailed physical and emotional overload. It is important to emphasize that resilience was observed in several aspects, significantly present in the interviewee's life. It is hoped that this work will contribute to reflections for family members and health professionals on the difficult trajectory of “butterfly children” and their families, especially that of their mothers. It is relevant to develop new research to increase the number of participating mothers and in different social contexts.