Fatores associados ao cuidado de crianças nascidas com fissuras labiopalatinas: perspectivas de familiares e cuidadores

Abstract

Introduction: The initial impact of the birth of a child with malformation is sometimes so great that family members spend a great deal of time and energy to meet the child's first demands for treatment and rehabilitation, which makes them investigate further related to malformation. Rationale: Knowing the opinions of family members of children born with cleft lip and palate about treatment can contribute to the development of more inclusive public policies for FLP patients and to improve treatment and research protocols, including genetic counseling and actions to increase the bank genetic. The caregivers' experience in policy development allows the prevention of diseases and disorders associated with the occurrence of cleft lip and palate. Objectives: To analyze the experiences of family members of children born with cleft lip and palate about the treatment and guidelines received about the care of children born with this malformation. Method: This is a qualitative study designed for analysis under the Discourse Analysis technique from the testimonies of 11 (eleven) mothers of children with FLP and who share a site oriented to family members and caregivers of children with FLP malformation. The categorical thematic analysis was chosen as the structuring axis of the findings. Results: Five types of (and for) mothers' reports were identified: (1) messages of encouragement and overcoming; (2) information messages; (3) personal reports of both individuals born with cleft lip and palate and relatives of these; (4) messages with photographs, including before and after restorative surgeries; and (5) member interaction messages in the comments, related to other issues that arise in the course of the publication of the comments. Conclusions: The report of emotional upheavals is frequent in the narratives, with mention of anguish and despair, but the feeling of resilience and hope is present as an intrinsic component of the feeling of motherhood. The discovery of the diagnosis during pregnancy or even the suspicion that the child may have cleft lip and palate in function of other cases in the family seem to minimize the impact of the news. Messages of conflict between the research participants and health professionals, the parents of the children, are shown in the messages, both in terms of professional conduct and treatment. Genetic research itself is surrounded by contradictions, uncertainties and disinformation. Genetic research appears in the narratives as an invasive procedure, being even named in this way by a health professional who followed the pregnancy of one of the mothers. It is also pointed out as unnecessary, given the large number of exams, consultations, procedures and surgeries to which children born with cleft lip and palate are submitted from the moment of their birth.