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

Abstract

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.

The experience of inflammatory bowel disease patients with healthcare

“…[26,27] Moreover, from the patient's perspective, an interview-based survey in Spain of CD patients emphasized the requirement for a dedicated healthcare professional, such as a specialist nurse, to attend to the daily needs of newly-diagnosed patients who are ill-equipped to deal with the uncertainty of the disease course. [28] Thus, our study contributes to reinforce the importance of the nurse's role.…”

Subjective expectations regarding longevity and future health: a cross‐sectional survey among patients with Crohn's disease

“…Crohn's disease (CD) is a chronic inflammatory bowel disease that may affect any part of the digestive track causing abdominal pain and diarrhoea, and may lead to functional disability and to life-threatening complications. Living with CD may cause a substantial burden on patients due to alterations in their current health, but not less importantly due to concerns and uncertainties they may have regarding their future health [1]. Patients' preferences and expectations regarding treatments and healthcare have come into focus in the past years [2][3][4].…”

Relación entre ácidos grasos omega-3/omega-6 presentes en la dieta y enfermedad inflamatoria intestinal: Scoping review

“…Sin embargo, en ninguna de estas guías se hace referencia a la alimentación recomendada para estas patologías. Del mismo modo, se ha evidenciado la necesidad de tener una herramienta que facilite el manejo de la EII por parte del equipo multidisciplinar de sanitarios [46][47][48] .…”