Aim. This paper reports the findings of research on the lived experience of fatigue in patients with primary biliary cirrhosis – a type of chronic liver disease.
Background. Fatigue is a universal phenomenon, commonly associated with both acute and chronic illness, but also seen in healthy individuals. However, it is not often addressed in healthcare encounters despite its disabling nature, perhaps because of the multitude of contributing factors and the lack of effective treatments. It is a common and debilitating symptom in patients with primary biliary cirrhosis. Despite the prevalence of fatigue in this condition, patients’ experiences of this symptom have not been researched.
Method. An interpretive-phenomenological approach developed by van Manen was chosen and this combines features of descriptive and interpretive phenomenology. Eight participants were interviewed during 2005 about their fatigue experience. Thematic analysis was conducted.
Findings. Five themes were identified: an unreliable body, fatigue as always present yet insidious, planning a life to conserve energy, struggling to maintain normality and emotional consequences. These themes reflected the unrelenting, intrusive nature of fatigue into the lives of those affected.
Conclusion. This research will provide empathic insight into the fatigue experience in this condition and generate communication about coping strategies. It will add to the body of research on fatigue in chronic conditions and may generate ideas for intervention research.