''I was not an ordinary mother'': The difficulties of motherhood in Arthrogryposis Multiplex Congenita

Abstract

The chapter addresses Arthrogryposis Multiple Congenita, a rare disease, that is, which is infrequent in the population, which consists of the presence of multiple joint contractures that lead to limitation of limb movements. It is a disease that imposes many specificities on the life of the person and family, especially the mother who assumes the role of main caregiver. The main objective is to present the difficulties faced by the mother from the repercussions of Arthrogryposis Multiplex Congenita in the maternity ward. These are the results of a field research with a qualitative approach that had as a methodological reference the method of a single case study. The research was carried out with the mother of a child who had a clinical diagnosis of Arthrogryposis Multiplex Congenita, selected based on specific criteria. The fieldwork was carried out at the home of the participating mother and in-depth interviews and observation were used as techniques to collect empirical data. The narratives were submitted to thematic content analysis according to the stages proposed by Bardin. The research was submitted for consideration and approved by a Research Ethics Committee. The reading of the results will make it possible to know the main difficulties faced by a mother based on the repercussions of this disease in motherhood.

DOI:https://doi.org/10.56238/sevened2024.012-063