Understanding the Meaning of Fatigue at the End of Life: An Ethnoscience Approach

Purpose: Fatigue is a devastating state of body and mind associated with distress at the end of life. We report the results of the third in a series of papers outlining a novel approach we have developed for understanding the meaning of fatigue by exploring how this meaning is shaped by beliefs and values. The aims of the study were to examine the perception and experiences of fatigue held by patients attending a hospice in England; identify the behavioural patterns that distinguish fatigue from tiredness and exhaustion; provide conceptual definitions of tiredness, fatigue and exhaustion.
Method: An Ethnoscience design was selected. The sample comprised nine people who attended a hospice between May and December 2009. Inclusion criteria included: at least 18 years of age, experiencing fatigue, able to provide informed consent and resident in the selected city in northern England for 10 years. Data were collected from two consecutive semi-structured interviews for each participant.
Results: We found that tiredness, fatigue and exhaustion are markers of progressive functional decline. Fatigue had two dimensions: 1) Mental Challenge, which included: emotional effects, cognitive realisation of decline and mental tenacity and 2) Physical Challenge, which included: limitations in leisure activities, limitations in functional roles and re-patterning routines.
Conclusions: This study provides evidence that symptom experience is socially constructed, which has potential implications for the development of effective interventions.