Understanding the meaning of fatigue at the end of life: An ethnoscience approach

Abstract

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. 2Conclusions: This study provides evidence that symptom experience is socially constructed, which has potential implications for the development of effective interventions.

The connections of physical and psychosocial symptoms among patients with terminal illnesses: A network analysis

“…These results are consistent with previous research identifying the multiple causes of weakness. 34,35 Hence, professionals should carefully conduct individual assessments on the nature and causes of weakness, thus enabling the effective selection of appropriate care strategies; psychoeducation about the symptom, general nursing strategies, nonpharmacologic and pharmacologic interventions. 36 Weakness was connected to the inability to share feelings with family or friends.…”

How Patients Experience and Give Meaning to Their Cancer-related Fatigue?

“…A preliminary comparison of the cross-cultural results can be find in the paper by Kirshbaum et al (2010) where preliminary analysis showed that while both "body" and "mind" are central to the nature of fatigue in all four study populations, the dimensions within these two central domains vary thus stimulating discussion surrounding the ways culture shapes the meaning of illness and therefore influence directions toward culturally sensitive interventions. Our results provides further evidences that symptom and illness experience are socially constructed thus suggesting the need to consider that in order to develop effective and tailored interventions.…”

“…Moreover, valuing patients' subjective illness experience is now more and more recognized as an effective way to foster patients' engagement in their care & cure process thus making interventions more aligned to their unmet needs (Barello et al, 2012). This meaning-making process is strictly connected to the system of values and beliefs of the patients and usually finds its manifestation in their use of language (Kirshbaum et al, 2012). In this research field, a qualitative approach could be particularly suited to capture the nuances of individual experience in a more "ecological" perspective.…”

“…Among qualitative methods, ethnoscience constitutes a suitable tool to explore socio-cultural phenomena through the study of language. Ethnoscience is based on the theoretical assumption that, as language is the primary human vehicle of meanings, there is a close connection between the linguistic expressions and the concrete human's experience (Graffigna et al 2010). Specifically, language can be considered as a manifestation of underlying representations of reality and subjective experiences otherwise inaccessible.…”

Making the most out of life: Exploring the contribution of attention restorative theory in developing a non-pharmacological intervention for fatigue—ERRATUM

“…However, there remains a clinically significant proportion of the global population for whom a prescription to undertake moderate aerobic would not be advisable nor reasonable; for example, people with mobility, muscle strength and flexibility limitations or specific restriction due to respiratory, cardiac, or advanced cancer conditions. In a recent study on the perceptions of fatigue in advanced cancer (Kirshbaum et al, 2012), this last point was noted first-hand. Participants in the study were all experiencing moderate to advanced levels of fatigue, but were constrained by their advancing limitations; it would have been completely inappropriate to advise increasing their levels of aerobic activity.…”