Experiencing the care of a family member with Crohn's disease: a qualitative study.

OBJECTIVES: To explore the experiences of caregivers living with relatives affected by Crohn's disease (CD) in a context in which the family provides social support. DESIGN: A qualitative study based on a phenomenological approach was conducted through in-depth interviews. SETTING: Participants living in Alicante (Spain) were recruited PARTICIPANTS: Eleven family caregivers of people with CD were interviewed. METHODS: The in-depth interviews took place in the participants' homes and were audio recorded and then transcribed for a qualitative thematic analysis. RESULTS: Five themes and accompanying subthemes were identified: (1) adaptation to the caring experience, (2) dichotomy 'with or without me', (3) unending burden, (4) need for knowledge and control of the disease, and (5) getting used to CD and normalising life. CONCLUSION: The findings contribute to an increase in the knowledge and comprehension of the experience of being the caregiver of a relative with CD, which could be useful for professionals towards improving the quality of the CD caring process. Due to the temporal dimension of CD with frequent bouts of exacerbation and remission, family caregivers must adapt and acquire skills during chronic illness evolution. Moreover, the lack of family caregivers' inclusion and follow-up within the Spanish health system makes them feel invisible and useless, which may contribute to caregivers' burdens.

Healthcare professionals' views of the experiences of individuals living with Crohn's Disease in Spain. A qualitative study.

Crohn's Disease (CD) in Spain lacks of a unified National Clinical Pathway and not even any early detection program and professional follow-up outpatient attention once it has been diagnosed. Little is known about the Spanish health professionals' views of the experiences of individuals living with Crohn's Disease nationwide and also about how the Spanish Health System faces this situation. A qualitative research method was conducted to explore this topic through in-depth interviews with eleven healthcare professionals, who represented different clinics treating people with CD from the province of Alicante (Spain). Three topics and seven sub-topics were derived from the analysis of the content emerging from the interviews. The three main topics were: the healthcare system as a hindrance for ongoing treatment of CD, the impact of the disease, support networks. The knowledge of CD gained by healthcare professionals, in the contexts studied here within, with regards to the psychosocial aspects and the experience of those living with the disease and their immediate circles, is poor, if not null on an academic level, becoming experiential on their incorporation into the professional field. Additionally, a priori, they lack the tools to address the doubts and concerns of patients from the moment of diagnosis through the ongoing care of the patient. Organizational hindrances, such as the lack of time and consensual guidelines for adequately monitoring CD patients in Alicante (Spain), further restrict the patient-professional relationship. Due to the consensus established by the National Agency regulating the contents of the Health Professions' Education and Training across the country, we are assuming that the phenomenon highlighted may be similar in other parts of Spain. Therefore, it can be said that healthcare professionals have a limited understanding of the impact of CD on the day-to-day life of those affected, not being considered a part of the CD patients' formal support network. Nonetheless, they are conscious of this limitation and advocate for multidisciplinary teams as the best means of attending to people living with CD. Our study outcomes may represent the first step onto identifying strategies and best practices for establishing an effective therapeutic relationship, as well as any hindering factors.

Understanding life experiences of people affected by Crohn's disease in Spain. A phenomenological approach.

BACKGROUND AND OBJECTIVES: People affected by Crohn's disease must adapt their lives to their new chronic condition, and therefore, understanding such experience can be helpful in planning effective interventions for the affected ones. The aim of this study was to gain an insight into such experience and how they adapted in different areas of their lives, particularly in a family-centred culture such as the Spanish one. METHOD: A descriptive phenomenological study was conducted through in-depth interviews to 19 people diagnosed of Crohn's disease in the province of Alicante (Spain). Once the interviews were transcribed, data were analysed using Colaizzi's seven-step method. RESULTS: Five emergent themes were identified: self-protection against the unknown cause; self-training; learning to live with Crohn's disease; perceived losses associated to Crohn's disease; and relationship with others. The results portrayed a chronically ill patient who is unconscious about the chronicity and consequently must develop strategies to keep living a similar life like the one lived before. CONCLUSIONS: This study revealed that people affected by Crohn's disease struggle with the fact of being a chronic patient with uncertainty about the illness and need to learn living with a chronic condition that limits their daily lives. Furthermore, the lack of Crohn's disease a professional in charge of these people's Cares such as the specific nursing role existing in other countries support in the Spanish Health System determines the loneliness those diagnosed experience to cope with the new situation.

[Crohn's disease: The experience of living with a chronic illness]. / Enfermedad de Crohn: experiencias de vivir con una cronicidad.

OBJECTIVE: To explore the experiences of people with Crohn disease (CD), their life-changing events, the impact on their lives and the strategies used to cope with it. MATERIALS AND METHODS: Qualitative study. In-depth interviews were carried out on 10 people affected by the disease in the province of Alicante (Spain). The collection, processing and analysis of data was performed using some phenomenological elements. RESULTS: The experiences of those affected can be classified into four main areas: recognition of the illness; perceived consequences of the disease itself by CD affected patients; disease management, and the search for support. CONCLUSIONS: Knowledge of the life experience of people affected by CD appears to be essential for the effective management of chronic illnesses when planning specific health treatment programs.

Enfermedad de Crohn: experiencias de vivir con una cronicidad / Crohn's disease: The experience of living with a chronic illness

Objetivo. Explorar las experiencias de personas con enfermedad de Crohn (EC), aquellos acontecimientos que modificaron sus vidas, el impacto y las estrategias utilizadas para sobrellevar la enfermedad. Material y métodos. Estudio cualitativo. Se realizaron 10 entrevistas a profundidad a afectados de la provincia de Alicante (España). La recolección de datos, procesamiento y análisis de los mismos se realizó a través de algunos elementos que recoge la fenomenología. Resultados. Las experiencias de los afectados se pueden clasificar en cuatro grandes temas: reconocimiento de enfermar, consecuencias percibidas por los afectados por EC de la propia enfermedad, gestión de la enfermedad y búsqueda de apoyo. Conclusiones. El conocimiento de la experiencia de vida de las personas afectadas por EC parece una herramienta indispensable para conseguir una gestión eficaz del proceso de cronicidad al momento de planificar programas sanitarios específicos de tratamiento.

Objective. To explore the experiences of people with Crohn disease (CD), their life-changing events, the impact on their lives and the strategies used to cope with it. Materials and Methods. Qualitative study. In-depth interviews were carried out on 10 people affected by the disease in the province of Alicante (Spain). The collection, processing and analysis of data was performed using some phenomenological elements. Results. The experiences of those affected can be classified into four main areas: recognition of the illness; perceived consequences of the disease itself by CD affected patients; disease management, and the search for support. Conclusions. Knowledge of the life experience of people affected by CD appears to be essential for the effective management of chronic illnesses when planning specific health treatment programs.

Life Experiences of People Affected by Crohn's Disease and Their Support Networks: Scoping Review.

This scoping review identifies and describes relevant studies related to the evidence published on life experiences and perceived social support of people affected by Crohn's disease. Twenty-three studies were definitely selected and analyzed for the topics explored. The overall findings show patients' needs and perceptions. There is a lack of evidence about patients' perceived needs as well as the understanding of social support that has contributed to improve their life experiences with that chronic illness. Lack of energy, loss of body control, body image damaged due to different treatments and surgeries, symptoms related to fear of disease, feeling burdened loss related to independence, and so on are some of the concerns with having to live with those affected by the Crohn. To underline those experiences through this scoping review provides valuable data for health care teams, especially for the nursing profession, considered by those affected as one of the main roles along the whole pathological process. This review provides the basis for developing broader research on the relatively underexplored topics and consequently improves specific programs that could address patients' needs.

[DIETARY HABITS AND FEEDING BELIEFS OF PEOPLE WITH CROHN'S DISEASE]. / HÁBITOS DIETÉTICOS Y CREENCIAS SOBRE LA ALIMENTACIÓN DE LAS PERSONAS CON ENFERMEDAD DE CROHN.

INTRODUCTION: Crohn's disease (CD) is a chronic illness of unknown etiology. The consequences that CD causes nutritionally depend on several factors. However, little is known about the nutritional practices that CD affected people adopt once diagnosed. OBJECTIVE: to explore the experience of those affected in relation to food intake, with the future goal of understanding those experiences and design effective and appropriate interventions. SUBJECTS AND METHODS: a qualitative design based on ethnographic approach was used. 19 semi-structured interviews were conducted in Alicante, until data saturation was reached and later the analysis of categories and subcategories was developed. RESULTS: 5 categories with their subcategories were identified from the data collected on the experience of feeding: 1) Beliefs about nutrition and CD, 2) Changing eating habits, 3) Finding information about food and CD, 4) The role of professionals, 5) Self-management. CONCLUSIONS: knowledge of the dietary habits of the person with CD, may provide professional workforce with the appropriate information for management and support in terms of prevention, health promotion and health education, useful for the organization of health institutions, where those things are not usually taken into account since the CD approach is purely based on clinical and pathological aspects. Consequently, it appears a need of a new CD perspective based on health, focused on promoting healthy habits and from a multidisciplinary approach.

Introducción: la enfermedad de Crohn es una enfermedad crónica de etiopatogenia desconocida. Las consecuencias que esta enfermedad provoca a nivel nutricional dependen de varios factores. Sin embargo, poco se sabe sobre las prácticas nutricionales que adoptan estos pacientes una vez diagnosticados. Objetivo: explorar la experiencia de los afectados en relación con la ingesta alimentaria, con el objetivo futuro de comprender dichas experiencias y diseñar intervenciones eficaces y adecuadas. Metodología y sujetos: se empleó un diseño cualitativo basado en el enfoque etnográfico. Se realizaron 19 entrevistas semiestructuradas, hasta conseguir la saturación de la información, a afectados por la enfermedad de Crohn, en la provincia de Alicante y, posteriormente, se realizó el análisis temático. Resultados: cinco categorías con sus respectivas subcategorías de análisis fueron identificadas a partir de los datos sobre la experiencia de alimentación de las personas entrevistadas. 1) Creencias sobre nutrición y EC, 2) Modificación de los hábitos alimentarios, 3) Búsqueda de información sobre alimentación y EC, 4) El papel de los profesionales, 5) Autogestión. Conclusiones: el conocimiento de los hábitos dietéticos de la persona con EC en una población en la que su dieta se presupone que culturalmente es reconocida como saludable, nos puede dar pautas de abordaje o apoyo profesional tanto en materia de prevención, promoción y educación para la salud, así como sobre su nivel organizativo en las instituciones sanitarias, cosas que actualmente no se tienen en cuenta, puesto que el abordaje de la EC es meramente clínico y con enfoque patológico, pero no desde una perspectiva de salud, fomentando hábitos saludables desde la multidisciplinariedad.

Roleplaying en el proceso de enseñanza-aprendizaje de enfermería: valoración de los profesores / Role-playing in the teaching process in nursing: evaluation by professors

El objetivo de este estudio es evaluar el roleplaying como herramienta metodológica en el proceso de enseñanza-aprendizaje de pregrado en enfermería, identificando las actitudes de los profesores ante el role playing, y analizando los comentarios de estos después de su utilización en el aula. Investigación de naturaleza reflexiva y enfoque cualitativo basado en la interacción simbólica. La recolección de datos se realizó durante los años académicos 2006-2007 y 2007-2008, a dos profesores de la asignatura del tercer año en la Escuela de Enfermería "X". Los resultados muestran el roleplaying como categoría temática seleccionada y permiten la clasificación en subcategorías y códigos. El análisis de los datos permitió identificar lo que realmente sucede con el roleplaying como herramienta metodológica en el proceso de enseñanza-aprendizaje de enfermería, por qué y cuáles son sus consecuencias.

Perfil emocional de los estudiantes en prácticas clínicas: Acción tutorial en enfermería para apoyo, formación, desarrollo y control de las emociones / Emotional outline of the students in clinical practice: Tutorial action in nursing for support, formation, development and control of the emotions

Es necesario educar la inteligencia emocional y el desarrollo socio-emocional de los estudiantes en el ámbito educativo de enfermería. Las universidades son evaluadas por la calidad del conocimiento y capacitación técnica ofrecida, mientras se otorga poca atención a la adquisición de los valores, comportamientos, actitudes personales y profesionales. Objetivo: conocer el perfil emocional de estudiantes en prácticas clínicas y su relación con el aprendizaje (rendimiento). Metodología: estudio descriptivo exploratorio, transversal, realizado entre 2005 y 2007. Se llevaron a cabo actividades para detectar respuestas emocionales de estudiantes de enfermería en el aprendizaje clínico, objetivando y evaluando a través de Spanish modified Trait Meta-Mood Scale-24 (TMMS-24), con autoinformes, observación externa y tutorización. La muestra (n=100) la forman todos los estudiantes de enfermería asignados al Hospital de Elda (Alicante-España). Resultados: la totalidad de los estudiantes responde a una adecuada atención, claridad y reparación emocional. El porcentaje de mejora se encuentra, para varones y mujeres, en los ítems de Atención y Claridad emocional en un 30% siendo la necesidad de mejorar la Reparación, en las mujeres, del 32,14%, y en los hombres, del 37,5%. Existen diferencias en cómo se perciben los estudiantes en las relaciones de equipo (autoinformes) y cómo son observados por los profesionales. En la tutorización expresan sentimientos relacionados con los profesionales o los propios pacientes, inseguridad, aflicción, impotencia, rabia y marginación. Conclusiones: estudiantes con necesidades de mejora en control y manejo emocional perciben más negativamente el entorno clínico, la tutorización y el apoyo recibido.

Education of emotional intelligence and promotion the evolutive and socioemotional development of medical students is necessary in the educational ambit. Universities are evaluated for their quality in terms of knowledge and technical training, paying less attention to the acquisition of values, behavior, personal and professional attitudes. Objective: Know the emotional profile of the students in clinical practice and their relationship with learning (efficiency). Methodology: Graphic exploratory study, transversal, with activities to find emotional responses of nursing students in the clinical learning. Evaluate knowledge through the Spanish modified trait meta-mood scale – 24 (TMMS-24), with self reports, external observation and tutorials. The sample (N=100) is formed by all nursing students allocated in Elda’s Hospital (Alicante-Spain). The study was conducted in 2005/2006 and 2006/2007. Results: The tally suggests solutions to correct attention, clarity, and emotional reparation. The percentage of improvement is found for men and women in the areas of Attention and Emotional clarity by 30%, being the necessity of improvement the reparation in women of the 32.14% and 37.5% in men. The difference is in how the students are perceived in the team’s relationships and how they are observed by professionals. In the tutorial sessions they express different feelings related with professionals or patients, fear, emotions, insecurity, sadness, impotence, anger, and marginalization. Conclusions: Students with needs in control and emotional handling perceived negatively their environment during clinical practices and support received.

Nuevo enfoque en el proceso de enseñanza-aprendizaje para la interrelación de conocimientos y formación de clínica/comunitaria / New approach in the learning-training process to interrelate knowledge and clinical and community training

El trabajo analiza la interrelación de conocimientos desde una nueva perspectiva que tiene en cuenta a docentes, estudiantes y enfermeras asistenciales. Lapráctica permite el aprendizaje experiencial. Existe una dicotomía entre teoría y práctica, que en enfermería adquiere la mayor importancia. El Espacio Europeo de Educación Superior favorece una mayor y mejor interrelación del aprendizaje reflexivo clínico. Permiteal estudiante/profesor/profesional el aprendizaje a lo largo de la vida y la adaptación a las necesidades de la comunidad. Los cambios en la universidad se hacen con base en novedosos planteamientos metodológicos que permiten enfrentarse con éxito a las nuevas situaciones de enseñanza-aprendizaje. El profesor debe enseñar a aprender a los estudiantes. El profesional, en el proceso clínico/comunitario, debe generar un trabajo de construcción de nuevos conceptos y saberes teóricos a partir de situaciones específicas y una integracióne interrelación de los recursos de aprendizaje. El aumento de autonomía del estudiante, la superación de barreras de la distancia, el tiempo para acceder al aprendizaje, mayor interacción, oportunidad de compartir el control de las actividades de aprendizaje mediante la intercomunicación en un marco de apoyo y colaboración, son algunos de los efectos que se pretenden conseguir en el nuevo espacio europeo.