Living with fatigue : how patients with Systemic Lupus Erythematosus describe and evaluate their way of coping with fatigue.

Bouma, M.B. (2015) Living with fatigue : how patients with Systemic Lupus Erythematosus describe and evaluate their way of coping with fatigue.

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Abstract:Systemic lupus erythematosus (SLE) is a chronic, inflammatory, systemic autoimmune disease that can affect multiple organs and tissues. Of the symptoms related to this chronic disease, fatigue is often described as the most enduring and crippling. The impact of fatigue on patients has been extensively explored in the literature. However, the impact patients may have on their fatigue is scarcely examined. The aim of this study was thus to explore from a patient perspective, how patients with SLE live with and possibly influence and manage their fatigue. Data for this study was collected using a qualitative cross-sectional research design. Participants for this study were recruited at a national congress in the Netherlands for patients with systemic autoimmune diseases. Inclusion criteria were: a diagnoses of Systemic Lupus Erythematosus (SLE) or a similar systemic autoimmune disease and experiencing severe disease related fatigue. This study contained 20 participants (19 female; 1 male). The patients were interviewed using a semi-structured interview scheme. The patients were asked to describe their way of coping with fatigue and how they evaluated their way of coping. All interviews were transcribed verbatim and themes and codes were identified through inductive and deductive coding. SLE related fatigue is characterized by patients as an always present, crippling and fluctuating fatigue. In comparison to ordinary fatigue, SLE related fatigue is said to be more extreme. Fatigue causes patients to adapt their lifestyle to a slower pace, where rest, pausing, and making choices of what to do and when to do things is daily dilemma. Three general coping strategies were distinguished: one where patients choose to approach their fatigue with a fighting stance, a second where patients give in to the fatigue and a third where patients have an attitude which is a combination of these two positions. The patients in this study possess a broad range of coping tactics: resting and pausing, planning, dosing and prioritising activities, searching information, altering hobbies or adopting a healthy lifestyle and seeking practical help from their partner or social environment. This study shows that the most effective coping strategy involves an attitude where patients find a balance between taking in account fatigue to the extent they still maintain physical functioning, the capability to perform activities and the ability to make choices of personal importance. SLE patients have acquired and utilize a wide range of problem-focused, emotion-focused an future orientated coping tactics to influence and manage their fatigue. The influence of patients on their fatigue seems to be marginal, only affecting if an how much their fatigue level rises. Future research should focus on examining which coping strategies and particularly tactics constitute adequate coping, as measured on psychological distress, physical health status, experienced fatigue and overall quality of life.
Item Type:Essay (Master)
Faculty:BMS: Behavioural, Management and Social Sciences
Subject:77 psychology
Programme:Psychology MSc (66604)
Link to this item:http://purl.utwente.nl/essays/68248
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