Using Representational Approach Based Education to Improve self-Care Ability of Patients with Systemic Lupus Erythematosus
背景：全身性紅斑狼瘡(Systemic Lupus Erythematosus, SLE)是一種無法痊癒的慢性病，影響全身多處器官，造成許多症狀，因此提升患者的自我照顧能力是非常重要的議題。
方法：本研究為隨機臨床試驗研究，於北部某醫學中心之風濕免疫門診就診半年以上之全身性紅斑狼瘡患者，依SLEDAI分層後隨機分配為實驗組(n=37)及對照組(n=35)，先以問卷了解患者對於疾病的認知、症狀困擾、生活品質及自我效能，實驗組結合研究者擬定之衛教手冊，依據詮釋取向衛教方式給予每週一次，共四週之個別化全面衛教，對照組則給予一般衛教單張，同時追蹤一個月、三個月，比較實驗組及對照組對於自我照顧成效。資料分析採描述性統計、t-test、及廣義估計方程式(Generalized Estimating Equation, GEE)方式，以比較二組之成效差異。
結果：研究結果顯示門診目前全身性紅斑狼瘡患者症狀困擾以疲倦、記憶力減退及注意力不集中最常發生；GEE分析結果顯示經詮釋取向衛教介入後，受試者在症狀困擾上有顯著改善(p = .04)，但在自我效能及生活品質部分則沒有顯著影響，同時大家庭生活型態者比獨居者有更好的自我照顧。
BACKGROUND: The Systemic Lupus Erythematosus (SLE) is an incurable chronic disease. The SLE influences many organs of the patient and causes a lot of symptoms, including pain, fatigue, sleeping problems, anxiety, and depression. Therefore, the patient must possess the self-care ability to maintain a good quality of life.
OBJECTIVES: This study explored patients’ representation of SLE and the performance of the representational approach based education program on the self-care ability of patients with SLE
METHODS: This study was a clinical randomized control trial and the participants were recruited from the Rheumatology clinic for at least six months in a medical center in Taiwan. The patients are randomly assigned into an experimental group (n=37) and a control group (n=35) after stratifying according to the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI). The illness perception, the symptom stress, the quality of life, and the illness self-efficacy of the patients were evaluated with a set of questionnaires. In the experimental group, the patients were educated according to the representational approach based education program with the education brochure drafted by the researchers. Moreover, the patients in the experimental group were respectively provided with a four-week personalized education according to the symptom stress of each patient once. On the other side, the patients in the control group were provided with the usual education sheet. The patients have followed up after one, and three months to compare the symptom distress, self-care efficacy, and quality of life between the two groups. The descriptive statistics, the t-test and the generalized estimating equation (GEE) are utilized to analyze the collected data.
RESULTS: The analyses showed the symptom distress of the patients mostly came from the tiredness, the memory impairment and distraction. The analyses based on the GEE showed a prominent improvement (p=.04) may be found on the patients educated according to the representational approach based education program. The self-efficacy of symptom management and the quality of life, however, do not have a notable improvement. Moreover, the patients living with family have a better self-efficacy of symptom management than those living alone.
CONCLUSIONS: Compared with the conventional education program, the representational approach based education program may have a better improvement on the symptom distress of the patients, but does not have a notable improvement on the self-efficacy of symptom management and the quality of life. During the education process, a friendly therapeutic relationship may improve the performance of the representational approach based education program, especially for the patients with less support from relatives and friends. The study and the drafted education brochure may provide a better reference for the clinical nursing staff performing the education program.
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