Buscando incansavelmente por melhores condições de saúde e vida para o filho com mielomeningocele

Abstract

This work aimed to know the experience of families in the care of children with myelomeningocele, seeking to investigate the repercussion of the disease in the family context and to identify the factors that integrate care to this child at home. It is a qualitative research, that adopted as theoretical reference the Symbolic Interacionismo and as methodological referential the Theory Grounded in the Data. Thirteen families participated in the study, with a total of 28 participants. For data collection, semi-structured interviews were carried out at the participants' homes and the data analysis was performed concomitantly with the collection, according to the steps recommended by the referential. It was possible to understand that the experience is constituted by two Phenomena: "Facing the malformation of the child" and "Overcoming expectations". The first one indicates the moments of difficulties experienced by the family with the discovery of the diagnosis; uncertainties and fear of caring; uncertain prognoses; incessant treatments; mobilization of family members to meet the child's health needs; the support received and the obstacles faced. The second depicts a rearrangement of the family beyond curative treatments; this search through various treatments, stimuli, devices and physical activity overcome the limitations of the child. They value the child's awareness of their difficulties, participating in and potentializing the treatments, as well as stimulating self-care, thriving future independence. Through these phenomena the Central Category and the Theoretical Model were identified: "Tirelessly looking for better health and life conditions for the child", which represents the experience of the family in the care of the child with myelomeningocele in the study population. Aiming at the autonomy of the child, the family mobilizes itself to the necessary treatments, learn the care, adaptation of the routine, as well as supply for all the needs of the child so that it reaches a potential development, prospecting a less dependent future with inclusion and social ascension. The results lead to the reflection on important areas of nursing action, such as rehabilitation nursing, which was highlighted in this study, since the family members' desire to be cared for; and family nursing, which also shows a potential support for this trajectory, due to its capacity to include the family in the care process.