Factors Influencing the Life Experiences of Individuals With Inflammatory Bowel Disease.

Inflammatory bowel disease has a negative impact on individuals perception of their health status and is associated with disabling processes that have physical, social, and work repercussions. The objectives of this study were to describe the life experiences of individuals with Crohn disease and ulcerative colitis and to develop a theoretical framework to describe the relationships of these diseases with personal and clinical factors. A qualitative study on the basis of grounded theory was conducted, involving individual and semistructured interviews on the life experiences of 14 adults of different ages with inflammatory bowel disease in relapse or inactive phase. The individuals in relapse phase and those with a short time since diagnosis had the most negative perceptions of their health, and experienced impaired ability for daily activities. The life experiences of individuals with inflammatory bowel disease were influenced by the time since diagnosis and the disease phase, with no gender difference in either factor. The predominant strategy of participants for coping with the disease was to pursue normality. According to these findings, nursing interventions should focus on the initial adaptation phase and on coping strategies during active phases of the disease.

Cultural Adaptation and Validation of the Inflammatory Bowel Disease Disability Index in a Spanish Population and Its Association with Sociodemographic and Clinical Factors.

Inflammatory bowel diseases generate disability. We aimed to adapt and validate the Inflammatory Bowel Disease Disability Index in a Spanish population and to analyze the sociodemographic and clinical factors associated with disability in patients with Crohn's disease and ulcerative colitis. Cultural adaptation and validation of psychometric properties in the index were done, along with an observational, cross-sectional, and analytical approach to determine associations with sociodemographic and clinical factors. Sociodemographic data, quality of life (using the Inflammatory Bowel Disease Questionnaire-32), and indicators of disease activity were collected, among others. A total of 170 subjects participated. The index showed high internal consistency, with a Cronbach's alpha of 0.869 and concurrent validity with the Inflammatory Bowel Disease Questionnaire-32 (r = 0.723, p < 0.001). The average score of the index was -3.91. Greater degrees of disability were found in women (mean = -6.77) than in men (mean = -1.25) (p = 0.018), in patients with Crohn's disease (mean = -5.94) rather than those with ulcerative colitis (mean = -0.94) (p = 0.028), and in patients in the moderately active disease phase (mean = -20.94) rather than those in the mildly active disease phase (mean = -2.65) and/or those in remission (mean = -1.40) (p < 0.001). The Disability Index is a valid tool for the Spanish population and is associated with sex, type of illness, and disease activity. It is a useful index in evaluating and monitoring disability in patients with inflammatory bowel disease.

Siempre hay algo bueno detrás de todo lo malo. Otra perspectiva de la Enfermedad de Crohn / There is always something good behind the bad things. Another perspective of Crohn's disease

A través del relato biográfico construido desde la narración de Rafael, enfermo de Crohn y presidente de una asociación provincial de enfermos, nos acercamos a otra forma de ver y vivir la realidad de una enfermedad crónica. Para lograrlo, se ha seguido una metodología cualitativa y descriptiva que permite extraer del discurso del informante la importancia que tiene tanto la información como el apoyo y ayuda, que en un momento dado, se pueden prestar aquellas personas que han vivido una experiencia vital, que sin llegar a ser idéntica, resulta muy similar. Asimismo, nos ofrece la oportunidad de conocer una perspectiva de afrontamiento y superación de las experiencias negativas de la vida desde el optimismo y la esperanza. Finalmente, establece como propósito final conseguir mejorar y aumentar su calidad de vida (AU)

Through the biographical story narrated by Rafael, a patient with Crohn's disease and president of a provincial association of people diagnosed with Crohn's disease, we will approach to a different way of seeing and living the reality of a chronic illness. To succeed in it, we have followed a qualitative and descriptive methodology that allows us to understand, from the words of the informant, the importance of the information as well as the support and help, which can be exchanged in a specific moment by those people who have lived a vital experience, not an identical one but very similar. Besides, it is also an opportunity to know a view to face and overcome the negative experiences of life from the optimism and the hope. Eventually, the final aim is to improve and increase the quality of life (AU)