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. 2020 May 29;7(Suppl 1):S31-S37.
doi: 10.1016/j.ijnss.2020.05.006. eCollection 2020 Sep 10.

Life course changes provoked by chronic disease: A study on everyday life for patients with systemic lupus erythematosus

Zheng Huangfu  1
Affiliations

Life course changes provoked by chronic disease: A study on everyday life for patients with systemic lupus erythematosus

Zheng Huangfu. Int J Nurs Sci. .

Abstract

Objective: This study examined patients with systemic lupus erythematosus (SLE) as a means to explore the impacts of chronic disease on life courses.

Methods: A semi-structured in-depth interviews were conducted with nine patients in China in 2017; participants were included based on their having or having had facial butterfly erythema.

Results: The study focused on both the disease's impact on the patients' health and on their daily lives. Four core themes emerged: visible changes in the patient's bodies, social dilemmas, "the encouragement of disease", and a new perspective on the relationship between disease and health. One important finding was that the occurrence of a chronic disease did not have only negative repercussions; some patients felt that there were advantages to being sick. Chronic disease resulted in a reworking of daily life. The patients developed a self-referential model of healing.

Conclusion: The distinct interpretations of the same disease offered by different patients served to yield a more complete understanding of the disease. People with SLE adjust their thinking about the disease based on personal feelings as well as experiences and pursue a dialogue on their illness based on the disease pattern unique to them. The meaning that disease had for the patients was not limited to negative connotations.

Keywords: Body; Chronic disease; Life course; Mental processes; Social dilemma; Systemic lupus erythematosus.

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Conflict of interest statement

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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