Abstract
Background
Fatigue is a common and burdensome symptom of inflammatory bowel disease (IBD). Although many symptoms of IBD can be debilitating, fatigue is reported by people with IBD as the most difficult symptom to live with. It is experienced by up to 86% of people in active disease and 41–48% of people with IBD in remission, and impacts greatly on all aspects of people’s lives. Fatigue is a complex and invisible symptom and therefore can often be overlooked by those caring for people with IBD. Since it is invisible, it can only be made known to healthcare professionals if patients seek help for it. The experience of people who seek help for IBD fatigue is unknown, as are the reasons some choose to seek help and others do not. This study aims to explore the determinants of help-seeking behaviour for fatigue in IBD and examine why some people with IBD fatigue are more likely to seek help than others.
Methods
An exploratory qualitative method was employed, underpinned by the Theory of Planned Behaviour. A voluntary sample of 12 people with a diagnosis of IBD was recruited from the Irish Society of Crohn’s and Colitis. The sample included people who had and who had not sought help for IBD fatigue in the past. Semi-structured interviews were conducted using an interview guide. Themes were uncovered using content analysis.
Results
Themes uncovered included symptom perception, impact of IBD fatigue and knowledge of and access to sources of help. Most commonly, people did not seek help if they could continue life with relative normalcy in spite of IBD fatigue. Access and availability of help was perceived as good. Barriers, such as time and cost, were identified as making help-seeking more difficult at times, however these did not prevent seeking help. Poor knowledge of the sources of help, IBD fatigue being regarded as an inferior symptom to other symptoms and the perceived lack of interventions to manage the complex symptom emerged as important factors influencing help-seeking behaviour.
Conclusion
The Theory of Planned Behaviour was found to be a useful framework to predict help-seeking behaviour for IBD fatigue. Symptom perception, impact of IBD fatigue and knowledge of and access to sources of help are the most influential aspects of help-seeking behaviour. IBD fatigue appears to lack the legitimacy of other IBD symptoms. Therefore, there is a need for healthcare professionals to fully acknowledge and routinely assess fatigue as part of the clinical management of IBD. Further research aimed at specifically managing fatigue as a major IBD burden is warranted, in particular multidimensional, holistic interventions to help people cope with the impact of IBD fatigue.
Healthcare professionals' intentions to use clinical guidelines: a survey using the theory of planned behaviour
