La vida tras una ostomía de eliminación. Un estudio cualitativo en adolescentes con Enfermedad Inflamatoria Intestinal

Abstract

Introducción: La transición a la adolescencia es uno de los períodos de mayor complejidad del desarrollo humano por los desafíos físicos, emocionales y psicológicos que lo caracterizan. Si a esto se le añade una enfermedad crónica como la Enfermedad Inflamatoria Intestinal y las posibles secuelas como la práctica de una ostomía, esta etapa aún se complica más. La atención de esta patología se ha desplazado en cierta medida del hospital al ámbito ambulatorio, siendo necesaria la investigación de los desafíos psicosociales que implica vivir con la enfermedad en este grupo de población, pues la mayoría de estudios existentes sobre el tema son de naturaleza biomédica. Objetivo: Comprender las experiencias, los sentimientos y las percepciones de los adolescentes con ostomía digestiva de eliminación derivada del padecimiento de una Enfermedad Inflamatoria Intestinal (Colitis Ulcerosa y Enfermedad de Crohn). Método: Estudio cualitativo, guiado por el paradigma interpretativo/contructivista de la fenomenología hermenéutica de Heidegger. Sujetos de estudio: Adolescentes ostomizados, diagnosticados de Enfermedad Inflamatoria Intestinal, atendidos en el Hospital Vall d’Hebron de Barcelona. La estrategia de muestreo empleada será intencional y, si fuera necesario posteriormente se realizaría un muestreo en bola de nieve. El número total de participantes se determinará cuando se logre saturar la información. Para la recogida de información se utilizará la entrevista individual semiestructurada. Análisis de los datos: Se realizará un análisis de contenido temático siguiendo las fases propuestas por Taylor y Bodgan. Se utilizará el software para datos cualitativos Nvivo®. Aplicabilidad: Los datos obtenidos permitirán a los profesionales de Atención Primaria conocer cuáles son las áreas más afectadas en esta población, pudiendo reorientar nuestra actividad asistencial y garantizar la continuidad de cuidados. Introduction: The transition to adolescence is one of the most complex periods of human development because of the physical, emotional and psychological challenges that characterize it. If to this is added a chronic disease such as Inflammatory Bowel Disease and possible sequelae such as the practice of an ostomy, this stage is further complicated. Attention to this pathology has shifted to some extent from the hospital to the outpatient setting, requiring research into the psychosocial challenges of living with the disease in this population group, as most existing studies on the subject are biomedical in nature. Objective: To understand the experiences, feelings and perceptions of adolescents with digestive ostomy of elimination derived from the suffering of an Inflammatory Bowel Disease (Ulcerative Colitis and Crohn's Disease). Methods: Qualitative study, guided by Heidegger’s interpretative/contructivist paradigm of hermeneutic phenomenology. Participants: Ostomized adolescents, diagnosed with Inflammatory Bowel Disease, treated at the Vall d'Hebron Hospital in Barcelona. The sampling strategy used shall be intentional and, if necessary, snowball sampling shall be carried out at a later date. The total number of participants will be determined when the information is saturated. The semistructured individual interview shall be used for the collection of information. Data analysis: A thematic content analysis will be carried out following the phases proposed by Taylor and Bodgan. The software will be used for Nvivo® qualitative data. Applicability: The data obtained will allow primary care professionals to know which areas are most affected in this population, being able to reorient our healthcare activity and ensure continuity of care.

Introduction: The transition to adolescence is one of the most complex periods of human development because of the physical, emotional and psychological challenges that characterize it. If to this is added a chronic disease such as Inflammatory Bowel Disease and possibl e sequelae such as the practice of an ostomy, this stage is further complicated. Attention to this pathology has shifted to some extent from the hospital to the outpatient setting, requiring research into the psychosocial challenges of living with the dise ase in this population group, as most existing studies on the subject are biomedical in nature. To understand the experiences, feelings and perceptions of adolescents with digestive ostomy Objective : of elimination derived from the suffering of an Inflammatory Bowel Disease (Ulcerative Colitis and Crohn's Disease). Methods: study, Qualitative guided by Heidegger’s interpretative/contructivist paradigm of hermeneutic phenomenology. Participants: Ostomi zed adolescents, diagnosed with Inflammatory Bowel Disease, treated at the Vall d'Hebron Hospital in Barcelona. The sampling strategy used shall be intentional and, if necessary, snowball sampling shall be carried out at a later date. The total number of p articipants will be determined when the information is saturated. The semistructured individual interview shall be used for the collection of information. Data analysis: A thematic content analysis will be carried out following the phases proposed by Tayl or and Bodgan. The software will be used for Nvivo qualitative data. Applicability: ® The data obtained will allow primary care professionals to know which areas are most affected in this population, being able to reorient our healthcare activity and ensure continuity of care. Keywords: Inflammatory Bowel Disease, Ostomy, Health Care, Feelings, Qualitative Reseach. Adolescence, Prim ary