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

• 作者: Zheng Huangfu
• 来源期刊: 国际护理科学（英文）
• 年，卷（期）: 2020,（z1）
• 所属期刊栏目: Special Issue:Medicine,Humanity and Media
• 页码范围: 31-37
• 页数: 7页
• 语种: 英文

摘要

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.