Perception of the parents of children with intestinal stoma regarding the nursing orientations

Objective: The present study aimed to identify the perception of the parents of children with intestinal elimination stoma about the guidelines received by the health team during hospitalization for their preparation. Methods: This is a cross-sectional, qualitative and quantitative study. Data collector occurred in the pediatric surgery ward of a university hospital through a semi-structured interview, recorded and composed of open and closed questions. Results: Nine parents of children with intestinal elimination stoma were followed up by the pediatric surgery team. Subsequently, it was submitted to the simple and categorical statistical analysis of Bardin. Regarding the main complications, the presence of dermatitis was indicated by 100% of the sample and the fungal infections followed by prolapse by 44.4%. The study showed that the lack of knowledge results in complications and insecurity. The support network is one of the resources used to search for information. A manual with guidelines was pointed out as a strategy for home care. Conclusion: Despite the failures in the guiding and supporting parents of children with a stoma, the feedbacks to help with changes and suggestions for valid strategies were important.

Proper preparation of a stoma is essential to provide quality of life (QOL) to the child 4 . In addition, the therapeutic care that involves these children should be oriented and guided by a multidisciplinary team so that the family feels more con dent in dealing with the challenges that such condition provides 1,3,5 .
To this end, the guidelines should be enlightening regarding the de nition of a stoma, what it serves, how to handle and what will be the routine of daily care for this child, always bringing the positives and bene ts 1,5 . It is important to allow the child and its family to manipulate the materials it will use to prevent surprises in the immediate postoperative period 3 .
ere is a shortage of references that indicate speci c guidelines on the discharge of the child with stoma 3 .
Considering that it is the responsibility of the nurse to interact and plan with the multidisciplinary team and the family in conducting discharge guidelines, from the moment of admission to the start of the stoma to the discharge of the child to home 5 , it is expected that this professional will also act in the development of quality scienti c material in this area.

RESUMEN
Objetivo: El presente estudio tuvo el objetivo de identifi car la percepción de los padres de niños con estomia de eliminación intestinal acerca de las orientaciones recibidas por el equipo de salud durante la hospitalización para su confección. Métodos: Se trata de un estudio transversal, cualiquantitativo. La recolección de datos ocurrió en la enfermería de cirugía pediátrica de un hospital universitario por medio de entrevista semiestructurada, grabada y compuesta por preguntas abiertas y cerradas. Resultados: Participaron de la investigación nueve padres de niños con estomia de eliminación intestinal en seguimiento por el equipo de cirugía pediátrica. Posteriormente, fueron sometidos al análisis estadístico simple y categorial temático de Bardin. Con respecto a las principales complicaciones, la presencia de dermatitis fue apuntada por el 100% de la muestra y las infecciones fúngicas seguidas de prolapso por el 44,4%. El estudio demostró que la falta de conocimiento resulta en complicaciones e inseguridad. La red de apoyo constituye uno de los recursos utilizados para la búsqueda de información. Un manual con orientaciones fue apuntado como estrategia para el cuidado en el domicilio. Conclusión: A pesar de las fallas en la orientación y el apoyo a los padres de niños con estomia, los feedbacks para ayudar en los cambios y sugerencias de estrategias válidas fueron importantes.  In the pre-analysis stage, the researcher made the complete transcription of the interviews, the oating reading to capture the main ideas contained and the elaboration of the indicators of the text fragments related to the object of study. In the exploration of the material, the data were codi ed and grouped into thematic categories, searching for the connections and integrations between the raw data.

DESCRIPTORES:
Finally, in the data processing and analysis stage, inferences and interpretations were made, based on the meanings and knowledge of the messages issued by the participants.
To identify the participants, the letter "P" followed by Arabic numbers from one to nine (P1, P2, P3...) corresponding to the chronological order of the meetings was adopted.

RESULTS AND DISCUSSION
Parents of nine children were interviewed, among them four mothers, two fathers and three mother and father couples.
According to Table 1, there was a higher prevalence of male children up to two years of age with clinical diagnosis, mostly related to congenital anomalies or malformations, with a terminal colostomy.  (Table 2). In a study that veri ed the occurrence of complications related to the manufacture of the stoma, it was observed that 15.25% presented complications, being 44.45% stenosis, 44.45% prolapses and 11.11% peristome dermatitis 8 . It was observed a great di erence between the two studies, mainly in relation to the number of dermatitides, which leads to the re ection of the determinants of this reality.
Such complication may be directly related to the failure of the guidelines on care with the stoma, generate insecurity and motivate the search for information in unsafe sources, a fact pointed out by the participants of this study.
All parents reported being the rst time they had contact with intestinal elimination stoma and this fact reinforces the necessity to be guided and clari ed about the process, so that, in addition to participating actively, it could follow and claim actions at all stages of the process of confection.

Lack of knowledge can result in complications with the stoma and peristomal skin
Participants expressed that they did not receive enough guidelines to care for the child with a home stoma, or even On the other hand, it should be emphasized that there is a risk related to the lack of scienti city of some sources mentioned by the participants that can lead to inappropriate behaviors that will result in complications for the child.
In view of the above, we can see a cyclical e ect of complications caused by the failure of the care guidelines to the child with the stoma during hospitalization. With a lack of guidance, parents expose children to inadequate behaviors that lead to complications. ese, therefore, tend to intensify insecurity and lead parents to seek alternative sources of guidance.

Knowledge generates safety to care for the child with a stoma
Some participants reported believing that having received more information about care with the stoma could have prevented su ering and allowed them to have more peace and security to care for their children.
"If we had more information we would not go through all this." (P3) "Everything that is the rst time, rst situation, is an impact for everyone; after you get to deal with the colostomy becomes easier." (P4) "In fact, their directions were good, which they taught us.
We did not know anything about a colostomy." (P7) It was possible to observe that the interviewed parents consider that the knowledge and experience acquired, by alternative means or by the very experience of care, tend to mitigate negative feelings such as insecurity, fear, and impotence. insecurity in the care of these children.