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.This study was funded by project ‘Diseño de una vía clínica de patologías crónicas como la hipertensión arterial y la enfermedad de Crohn. Orientación a la gestión de procesos’ (704753085-53085-45-514) integrated into the State plan I+D+I 2013-2016 Ministerio de Economía y Competitividad orientada a los Retos de la Sociedad and cofunded by ISCIII-Subdirección General de Evaluación y Fomento de la investigación el Fondo Europeo de Desarrollo Regional (FEDER)