N006 Exploring fatigue in inflammatory bowel disease: a descriptive phenomenological study
W. Czuber-Dochan*1, J. Armes1, E. Ream2, C. Norton1
1King’s College London, Florence Nightingale Faculty of Nursing & Midwifery, London, United Kingdom, 2University of Surrey, Faculty of Health and Medical Sciences, Guildford, United Kingdom
Fatigue is one of the main symptoms of inflammatory bowel disease (IBD), and it is frequently reported by people with active (86%) and quiescent (41%) disease. It is considered a complex and multifaceted symptom, affecting many aspects of individuals’ lives and affecting quality of life. To date, limited research has investigated the phenomenon of IBD-fatigue; little is known about specific areas of life affected by it or how people with IBD manage it. This study aimed to address this short fall in evidence.
Descriptive phenomenology with unstructured, in-depth interviews was employed. Twenty participants diagnosed with IBD and reporting fatigue were purposively selected from a group of volunteers and interviewed face-to-face. Interviews were audio-recorded, transcribed verbatim and analysed using Moustakas’ method. In Moustakas’ method data are analysed at individual and composite (group) level, to provide a description (texture) and an explanation (structure) of the studied phenomenon.
Five main themes, with many textural and structural sub-themes were identified. A wide range of terminology, including metaphors and similes, were used to describe fatigue reflecting its complex nature. Fatigue was presented as invisible, unpredictable, and with constantly fluctuating daily patterns and severity. This made reporting fatigue difficult and at times led to participants being challenged about its authenticity. An array of physical, psychological, cognitive, and situational factors were perceived to contribute to fatigue, and different methods (eg, sleep and rest, pacing, energy preservation, exercise, stress reduction, and asking for help) were attempted by participants to manage it. Most methods were not used systematically, possibly resulting in their apparently limited effectiveness. Effect of fatigue was perceived as negative, with participants constantly comparing their life and themselves as they were before fatigue and as they are now. They felt that fatigue controlled their daily lives, and they had a daily battle to defeat fatigue. Participants felt imprisoned in their fatigued, unreliable body, leaving them frustrated, isolated, and lacking self-confidence. They reported loss of self and self-identity, resisting acceptance of the ‘new fatigued me’.
Fatigue is a major and debilitating symptom for individuals diagnosed with IBD, reducing their quality of life. The complex, invisible, and fluctuating nature of fatigue makes it difficult for patients to describe to others. Patients need to be informed that fatigue is part of IBD and that they should be encouraged to report it to and seek help from health professionals.