University of Twente Student Theses


The experience and impact of fatigue in patients with systemic Lupus Erythematosus, and their partners : a qualitative study

Hoek, L.J.M. (2015) The experience and impact of fatigue in patients with systemic Lupus Erythematosus, and their partners : a qualitative study.

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Abstract:Background: Severe fatigue is one of the most disabling symptoms of systemic auto-immune diseases and has a major impact on quality of life of patients. How patients’ fatigue is experienced by partners and how it affects the quality of life as a couple has yet been underexplored. Therefore, the aim of this study was to explore the experience and impact of severe fatigue in patients and partners, facing a systemic auto-immune disease, as individuals and as couples. Methods: Data for this study were collected using a qualitative, cross-sectional design. Eligibility criteria required patients to be diagnosed with Systemic Lupus Erythematosus (SLE) or related diseases, experience fatigue on a daily or regular basis and couples to communicate in Dutch. This study contained nine adult heterosexual couples, whom were separately interviewed about their experience with patients’ severe fatigue and the impact on quality of life, using a semi-structured interview scheme. After obtaining all transcriptions, inductive and deductive coding was used to identify categories and data-patterns. Results: Severe fatigue did not only have a major impact on quality of life of patients, but also on their partners’ life. Among other aspects of quality of life, fatigue had the largest impact on cognitive functioning, activities of daily living and employment status in patients. For partners, patients’ fatigue caused above all the most impact on daily activities and the partner relationship. Clear differences between partners’ quality of life were found. In couples, communication, acceptance and knowledge of the disease were reported as important outcomes for relational satisfaction. Conclusion: Severe SLE-related fatigue was more disabling for patients than for partners, while the impact was comparable in couples for some domains. Communication, acceptance and knowledge of the illness were important outcomes for relational satisfaction within couples. Exploring the interpretation of efficient communication should be subject of future research in order to successfully develop self-management interventions for couples facing SLE-related fatigue.
Item Type:Essay (Master)
Faculty:BMS: Behavioural, Management and Social Sciences
Subject:77 psychology
Programme:Psychology MSc (66604)
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