The experience of facing the uncertainty in the young Systemic Lupus Erythematosus with lupus nephritis female patients

• Main Authors: Szu-Chien Tao, 陶思蒨
• Other Authors: Pei-Fan Mu
• Format: Others
• Language: zh-TW
• Published: 2014
• Online Access: http://ndltd.ncl.edu.tw/handle/40286621133510581269

碩士 === 國立陽明大學 === 臨床暨社區護理研究所 === 103 === Abstract The purpose of this study was to investigate the experience of facing uncertainty on the part of young female patients afflicted by systemic lupus erythematosus with lupus nephritis. Triangulation method was employed to have complete understanding of the study. This study adopted purposive sampling and focuses on patients from the out-patient and in-patient departments of a medical center in Taiwan; subjects were 12-40 years of age, with confirmed cases of systemic lupus erythematosus with lupus nephritis. These patients agreed to participate in this study, and accepted in-depth interviews and recording, or questionnaires, after the researcher explained the destination. The quantitative research hypotheses: 1) the uncertainty feeling of out-patients afflicted by SLE exhibited difference based on the severity of the disease between the past and current situation; 2) the uncertainty feeling of in-patients afflicted by SLE showed no difference based on the severity of the disease between the past and current situation; 3) the uncertainty feeling of out-patients and in-patients afflicted by SLE exhibited difference according to the current condition of the disease. A qualitative research was employed to investigate the uncertainty life experience while retrospections on the severe illness in the past and current situation between patients from the out-patient and in-patient departments. We undertook a retrospective and purposive sampling study of the 30 patients, using the Mishel uncertainty in illness scale (MUIS) questionnaire to collect group A’s and group B’s data; both A and B group patients’ retrospections on the uncertainty regarding the severe illness in the past and current situation were used to compare the differences between group A and B. In the quantitative research of this study, a semi-structured interview guide for in-depth interviews was used to collect data, and sample size was determined based on data analysis. To collect data from 5 to 8 patients from groups A and B, content analysis was used, and rigidity was controlled based on the concepts proposed by Lincoln and Guba (1985). The research results covered the nature of life uncertainty experience in systemic lupus erythematosus with lupus nephritis patients, and the differences of uncertainty between out-patient and in-patient department patients. This study revealed three findings through the quantitative research: 1) out-patient department patients’ current uncertainty is lower than the uncertainty of retrospective severe illness in the past; 2) in-patient department patients’ uncertainty does not significantly differ to current uncertainty; 3) out-patient department patients’ current uncertainty is lower than in-patient department patients’ uncertainty. There were a total of three findings in the qualitative research results of this study: 1) Resulting from false notions, feeling confused and out of control due to the disease; 2) feeling confused at bottom of the heart: shock and concern both internally and externally; 3) life reformation: the breakthrough and turning point caused by illness. In addition, combining qualitative interviews can bring us closer to the nature of the uncertainty experience, and will help the clinical staff when facing SLE patients, so that they can give respect and respond in a timely manner, providing attention to patients in a more appropriate way. Keywords: Systemic Lupus Erythematosus, nephritis, uncertainty, life experience