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Título: Experiência de crianças e adolescentes em transplante de medula óssea no contexto da doença oncológica
Outros títulos: Experience of children and adolescents undergoing bone marrow transplantation in the context of oncological disease
Experiencia de niños y adolescentes sometidos a trasplante de médula ósea en el contexto de la enfermedad oncológica
Autor(es): Garófalo, Camila Dornelas de Carvalho e
E-mail do autor: camiladornelasc@gmail.com
Orientador(es): Silveira, Aline Oliveira
Assunto: Transplante de medula óssea
Medula óssea
Oncologia infantil
Adolescentes
Data de publicação: 6-Mai-2022
Referência: GARÓFALO, Camila Dornelas de Carvalho e. Experiência de crianças e adolescentes em transplante de medula óssea no contexto da doença oncológica. 2022. 78 f., il. Dissertação (Mestrado em Enfermagem) — Universidade de Brasília, Brasília, 2022.
Resumo: Introduction: The Bone marrow transplantation (BMT) is an aggressive therapy aimed at correcting a qualitative or quantitative cellular defect by replacing diseased bone marrow with healthy stem cells. Its need often results from the failure in the conventional treatment of various diseases. The oncological context of BMT in pediatrics brings a series of challenges to children and adolescents, making it cardinal to understand their experiences in order to adequately meet their needs. Objective: To understand the experiences of children and adolescents undergoing bone marrow transplantation in the context of oncological disease. Method: Qualitative study, adopting the theoretical perspective of Symbolic Interactionism and the methodological perspective of Narrative Research. The data collection took place by filling out a specific instrument to characterize the participant's profile and audio-recorded in-depth interviews. Study participants were children and adolescents aged between 6 and 17 years who underwent bone marrow transplantation and were undergoing post-BMT follow-up at the institution chosen for the study. In order to analyze the qualitative data obtained through in-depth interviews, we opted for the analysis of narratives in a holistic perspective with an emphasis on content. Results: 3 adolescents and 4 children in post BMT took part in the study. Of these, 2 underwent allogeneic and the other 5 withstood autogenic transplantation. Five thematic categories were identified: perceptions about the bone marrow transplantation process, feelings of children and adolescents about the bone marrow transplantation process, needs and difficulties during the bone marrow transplantation process, strategies for coping with challenging situations, and the post-transplantation and its expectations. The understanding the experience of children and adolescents undergoing BMT in the context of oncological disease reveals how children perceive and give meaning to their experience. For the most part, the experiences brought to light were troublesome, challenging, but unfold good expectations for the future. Discussion: other studies, although barring different aspirations, registered similar experiences regarding the difficulties faced during the transplant process. It was also identified the importance of highlighting the child as a protagonist capable of self-reporting their own health status and experiences. Final considerations: The research disclosed that the experience studied is complex, hurtful and saturated with many challenges. The discomfort experienced surpassed the physical body affecting also the mind, feelings and social interactions of the participants. The wealth of the reports reinforces the importance and urgency to acknowledge and consider the reports of children and adolescents with the ultimate goal of improving the comprehensive and distinct care in the context of BMT and oncological diseases.
Abstract: Introduction: The Bone marrow transplantation (BMT) is an aggressive therapy aimed at correcting a qualitative or quantitative cellular defect by replacing diseased bone marrow with healthy stem cells. Its need often results from the failure in the conventional treatment of various diseases. The oncological context of BMT in pediatrics brings a series of challenges to children and adolescents, making it cardinal to understand their experiences in order to adequately meet their needs. Objective: To understand the experiences of children and adolescents undergoing bone marrow transplantation in the context of oncological disease. Method: Qualitative study, adopting the theoretical perspective of Symbolic Interactionism and the methodological perspective of Narrative Research. The data collection took place by filling out a specific instrument to characterize the participant's profile and audio-recorded in-depth interviews. Study participants were children and adolescents aged between 6 and 17 years who underwent bone marrow transplantation and were undergoing post-BMT follow-up at the institution chosen for the study. In order to analyze the qualitative data obtained through in-depth interviews, we opted for the analysis of narratives in a holistic perspective with an emphasis on content. Results: 3 adolescents and 4 children in post BMT took part in the study. Of these, 2 underwent allogeneic and the other 5 withstood autogenic transplantation. Five thematic categories were identified: perceptions about the bone marrow transplantation process, feelings of children and adolescents about the bone marrow transplantation process, needs and difficulties during the bone marrow transplantation process, strategies for coping with challenging situations, and the post-transplantation and its expectations. The understanding the experience of children and adolescents undergoing BMT in the context of oncological disease reveals how children perceive and give meaning to their experience. For the most part, the experiences brought to light were troublesome, challenging, but unfold good expectations for the future. Discussion: other studies, although barring different aspirations, registered similar experiences regarding the difficulties faced during the transplant process. It was also identified the importance of highlighting the child as a protagonist capable of self-reporting their own health status and experiences. Final considerations: The research disclosed that the experience studied is complex, hurtful and saturated with many challenges. The discomfort experienced surpassed the physical body affecting also the mind, feelings and social interactions of the participants. The wealth of the reports reinforces the importance and urgency to acknowledge and consider the reports of children and adolescents with the ultimate goal of improving the comprehensive and distinct care in the context of BMT and oncological diseases.
Resumen: Introducción: El trasplante de médula ósea (TMO) es una terapia agresiva destinada a corregir un defecto celular cualitativo o cuantitativo mediante la sustitución de la médula ósea enferma por células madre sanas. Su necesidad a menudo resulta del fracaso en el tratamiento convencional de diversas enfermedades. El contexto oncológico del TMO en pediatría trae consigo una serie de desafíos a los niños y adolescentes, siendo necesario conocer sus vivencias para atender adecuadamente sus necesidades. Objetivo: Comprender las vivencias de los niños y adolescentes sometidos a trasplante de médula ósea en el contexto de la enfermedad. Método: Estudio cualitativo, adoptando la perspectiva teórica del Interaccionismo Simbólico y la perspectiva metodológica de la Investigación Narrativa. La recolección de datos se realizó mediante el relleno de un instrumento específico para caracterizar el perfil del participante y entrevistas en profundidad grabadas en audio. Los participantes del estudio fueron niños y adolescentes con edades entre 6 y 17 años, sometidos a trasplante de médula ósea y en acompañamiento post-TMO en la institución elegida para el estudio. Para analizar los datos cualitativos obtenidos a través de entrevistas en profundidad, se optó por el análisis de las narrativas en una perspectiva holística con énfasis en el contenido. Resultados: Participaron del estudio 3 adolescentes y 4 niños en post TMO. De estos, 2 se sometieron a trasplante alogénico y 5 autógeno. Se identificaron cinco categorías temáticas: percepciones sobre el proceso de trasplante de médula ósea, sentimientos de niños y adolescentes sobre el proceso de trasplante de médula ósea, necesidades y dificultades durante el proceso de trasplante de médula ósea, estrategias para el enfrentamiento de situaciones desafiantes y el post trasplante y sus expectativas. Comprender la experiencia de niños y adolescentes sometidos a TMO en el contexto de la enfermedad oncológica revela cómo los niños perciben y dan sentido a su experiencia. En general, las experiencias reveladas fueron difíciles, desafiantes, pero con buenas expectativas para el futuro. Discusión: otros estudios, aunque con objetivos diferentes, registraron experiencias similares en cuanto a las dificultades enfrentadas en el proceso de trasplante. También se identificó la importancia de protagonizar al niño como un vocero capaz de auto-relatar su estado de salud y vivencias. Consideraciones finales: La investigación reveló que la experiencia estudiada es compleja, dolorosa y permeada de desafíos. El malestar experimentado superó el cuerpo físico, afectando también la mente, los sentimientos y las interacciones sociales de los participantes. La riqueza de informes refuerza la importancia y necesidad de escuchar y considerar los informes de niños y adolescentes con el objetivo final de mejorar la atención integral y única en el contexto de TMO y enfermedades oncológicas.
Unidade Acadêmica: Faculdade de Ciências da Saúde (FS)
Departamento de Enfermagem (FS ENF)
Informações adicionais: Dissertação (mestrado) — Universidade de Brasília, Faculdade de Ciências da Saúde, Programa de Pós-Graduação em Enfermagem, 2022.
Programa de pós-graduação: Programa de Pós-Graduação em Enfermagem
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