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Antecedentes y objetivo La educación terapéutica (ET) es eficaz e imprescindible en un contexto de prevalencia creciente de enfermedades crónicas, siendo necesarias herramientas para la planificación de programas estructurados. El objetivo fue elaborar una guía para el diseño y evaluación de un programa de ET. Métodos 1) Se constituyó un grupo multidisciplinario de 8 referentes en ET, cronicidad, calidad y seguridad, del hospital y la universidad. 2) Se realizó una revisión exhaustiva de la literatura científica sobre planificación de programas de ET dirigidos a pacientes crónicos, familiares o cuidadores. 3) El texto final se sometió a comentarios y sugerencias de participantes, del hospital y de atención primaria, en un curso sobre metodología de información y ET. Las recomendaciones fueron consensuadas, por unanimidad, por el grupo redactor. Resultados Se obtuvo un procedimiento normalizado de trabajo dirigido a profesionales implicados en planificación de programas de ET, basado en recomendaciones internacionales. El documento está estructurado en apartados: a) Definición del problema de salud y análisis de situación. b) Estructura del programa (recursos humanos y materiales); objetivos (salud, conducta y educativos) y metodología. c) Circuito que sigue el paciente y familia/cuidador en el programa. d) Evaluación e indicadores. La evaluación del procedimiento, en el marco de los cursos de metodología, fue favorable. Conclusiones La metodología aportada por este documento servirá de instrumento para planificar de forma homogénea y sistematizada los programas educativos, unificando criterios en su redacción. Sin embargo, requerirá su adaptación a la condición y la población a que se dirija cada programa (AU)

Background and objective Therapeutic patient education (TPE) is effective and essential in the context of the growing prevalence of chronic diseases in which tools are needed for planning structured programs. The objective of this project was to develop guidelines for designing and assessing a TPE program. Methods 1) We assembled a multidisciplinary group of 8 leaders in TPE, chronicity, quality and safety from the hospital and the university. 2) We conducted an exhaustive review of the scientific literature on the planning of TPE programs directed at chronically ill patients, their relatives and caregivers. 3) The final text underwent comments and suggestions by participants from the hospital and primary care centre during a course on information and TPE methodology. The recommendations were unanimously agreed upon by the writing group. Results We obtained a standardised work procedure targeted at professionals involved in planning TPE programs, based on international recommendations. The document is structured into sections: a) Definition of the health problem and analysis of the situation; b) Program structure (human resources and materials); objectives (health-related, behaviour-related and educational) and methodology; c) Path the patient and family/caregiver follows in the program; and d) Assessment and indicators. Assessment of the procedure, within the framework of the methodology courses, was favourable. Conclusions The methodology provided by this document serves as an instrument for the standardised and systematic planning of educational programs and unifies the criteria in their drafting. However, the document needs to be adapted to the condition and population to which each program is address (AU)

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BACKGROUND AND OBJECTIVE: Therapeutic patient education (TPE) is effective and essential in the context of the growing prevalence of chronic diseases in which tools are needed for planning structured programs. The objective of this project was to develop guidelines for designing and assessing a TPE program. METHODS: 1) We assembled a multidisciplinary group of 8 leaders in TPE, chronicity, quality and safety from the hospital and the university. 2) We conducted an exhaustive review of the scientific literature on the planning of TPE programs directed at chronically ill patients, their relatives and caregivers. 3) The final text underwent comments and suggestions by participants from the hospital and primary care centre during a course on information and TPE methodology. The recommendations were unanimously agreed upon by the writing group. RESULTS: We obtained a standardised work procedure targeted at professionals involved in planning TPE programs, based on international recommendations. The document is structured into sections: a) Definition of the health problem and analysis of the situation; b) Program structure (human resources and materials); objectives (health-related, behaviour-related and educational) and methodology; c) Path the patient and family/caregiver follows in the program; and d) Assessment and indicators. Assessment of the procedure, within the framework of the methodology courses, was favourable. CONCLUSIONS: The methodology provided by this document serves as an instrument for the standardised and systematic planning of educational programs and unifies the criteria in their drafting. However, the document needs to be adapted to the condition and population to which each program is addressed.

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OBJECTIVE: To determine and analyse the expectations, needs and experiences of relatives of critically ill patients as regards medical information and the level of their understanding. To find keys for improving communication and to draw up best practices in clinical information. MATERIAL AND METHODS: Qualitative research study through semi-structured interviews carried out in a polyvalent adult intensive care unit (ICU) in a University Hospital. PARTICIPANTS: relatives of patients who were admitted to the ICU and who were discharged alive from the Unit. Ten interviews were performed taking into account diversification variables such as, type of family relationship with patients, patient age, length of ICU stay, origin, and location at the time of the interview. RESULTS: The results of the analysis of 10 interviews focused on: the subjective position of the family in the ICU (the agonizing wait), what the ICU represents for the family (surveillance and monitoring of a situation between life and death), perceived care (complete delegation of care), and medical information (what and how they expect and what and how they receive it), as much in the first information (sincerity, hope, delicacy) as in the successive. CONCLUSIONS: There is divergence between what families expect and what they get as regards medical information. To know the expectations of the families will help to provide higher quality care and more humane treatment in the ICU.

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Objetivo: Conocer y comprender las expectativas, necesidades y vivencias de los familiares de pacientes críticos en relación con la información médica y el grado de comprensión de la misma. Encontrar claves para mejorar la comunicación y delinear buenas prácticas en materia de información clínica. Material y métodos: Estudio de investigación cualitativa mediante entrevistas semiestructuradas, realizado en una unidad de cuidados intensivos (UCI) polivalente de adultos de un hospital universitario. Población: familiares de pacientes que hubieran estado ingresados y que hubieran sido dados de alta vivos de la UCI.Instrumentos: se realizaron 10 entrevistas considerando como variables de diversificación: tipo de vínculo familiar con los pacientes, edad del paciente, tiempo de estancia en la UCI, origen del enfermo y su localización en el momento de la entrevista. Resultados: Del análisis de las 10 entrevistas realizadas, los resultados obtenidos giraron en torno a: la posición subjetiva del familiar en la UCI (la espera angustiosa), lo que representa la UCI para el familiar (vigilancia y control permanente de una situación entre la vida y la muerte), los cuidados percibidos (delegación completa de cuidados) y la información médica (qué y cómo la esperan y qué y cómo la reciben), tanto en la primera información (sinceridad, esperanza, delicadeza) como en las sucesivas. Conclusiones: Existe divergencia entre lo que los familiares esperan y lo que reciben en referencia a la información médica. Conocer las expectativas de las familias nos ayudará a dar una atención de mayor calidad y un trato más humano en nuestras UCI (AU)

Objective: To determine and analyse the expectations, needs and experiences of relatives of critically ill patients as regards medical information and the level of their understanding. To find keys for improving communication and to draw up best practices in clinical information. Material and methods: Qualitative research study through semi-structured interviews carried out in a polyvalent adult intensive care unit (ICU) in a University Hospital. Participants: relatives of patients who were admitted to the ICU and who were discharged alive from the Unit. Ten interviews were performed taking into account diversification variables such as, type of family relationship with patients, patient age, length of ICU stay, origin, and location at the time of the interview. Results: The results of the analysis of 10 interviews focused on: the subjective position of the family in the ICU (the agonizing wait), what the ICU represents for the family (surveillance and monitoring of a situation between life and death), perceived care (complete delegation of care), and medical information (what and how they expect and what and how they receive it), as much in the first information (sincerity, hope, delicacy) as in the successive. Conclusions: There is divergence between what families expect and what they get as regards medical information. To know the expectations of the families will help to provide higher quality care and more humane treatment in the ICU (AU)

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