Department of Nursing, Chang Gung Institute of Technology, Taiwan.
J Nurs Res. 2010 Sep;18(3):206-14. doi: 10.1097/JNR.0b013e3181ed578c.
Systemic lupus erythematosus (SLE) is an autoimmune disease that requires lifelong follow-up treatment. Most SLE patients experience feelings of helplessness and frustration in the period after which the condition has been brought under control but not yet cured. Thus, to improve the SLE patient's quality of life (QOL), it is very important to assist them to adjust to face both the severity of their disease and their own feelings of limitation and uncertainty, to understand their condition and required treatments, and to adopt self-help strategies to adjust to difficulties in daily life.
This study was designed to test both the hypothesized relationships in the Braden Self-help Model and the mediating effects of self-help on QOL in a sample of women with SLE.
DESIGN/METHODS: A cross-sectional design with causal modeling approach was used to verify specified relationships in the theoretical model. SLE patients who were registered with the Rainbow SLE Association and the Lupus SLE Foundation in Taiwan were recruited as participants by convenience sampling. A total of 231 SLE patients participated in this project. Data were collected using a self-administered structured questionnaire consisting of a personal information section, the Disease Course Graphic Scale, the Mishel Uncertainty in Illness Scale, the Limitation Scale, the Self-Control Scale, the Adult Role and Behavior Scale, and the Well-Being Scale.
Path analysis found a high level of significance for the coefficient of each path. We also identified a positive correlation between the disease severity and limitations and the factor of uncertainty and a negative correlation between the limitations and uncertainty and the factors of enabling skills, self-help, and QOL. A positive correlation among enabling skills, self-help, and QOL was also evident. The Sobel analysis pointed to self-help as having the greatest impact on QOL (79.15%).
CONCLUSIONS/IMPLICATIONS FOR PRACTICE: The study examined the applicability of the causal Braden Self-help Model on women with SLE and provides a basis for the design of intervention activities.
系统性红斑狼疮（SLE）是一种需要终身随访治疗的自身免疫性疾病。大多数 SLE 患者在病情得到控制但尚未治愈后会感到无助和沮丧。因此，提高 SLE 患者的生活质量（QOL）非常重要，帮助他们适应疾病的严重程度以及自身的限制和不确定性感，了解自己的病情和所需的治疗，并采用自助策略来适应日常生活中的困难。
本研究旨在检验 Braden 自助模型中的假设关系以及在台湾的彩虹狼疮协会和狼疮基金会登记的 SLE 患者样本中自助对 QOL 的中介效应。
设计/方法：采用横断面设计和因果建模方法来验证理论模型中指定的关系。通过方便抽样招募了台湾的彩虹狼疮协会和狼疮基金会登记的 SLE 患者作为参与者。共有 231 名 SLE 患者参加了本项目。数据收集使用了一份自我管理的结构化问卷，包括个人信息部分、疾病过程图形量表、Mishel 疾病不确定感量表、限制量表、自我控制量表、成人角色和行为量表以及幸福感量表。
路径分析发现每个路径的系数都具有高度显著性。我们还发现疾病严重程度与限制因素以及不确定性因素之间存在正相关，而限制因素与不确定性因素以及赋权技能、自助和 QOL 因素之间存在负相关。赋权技能、自助和 QOL 之间也存在正相关。Sobel 分析表明自助对 QOL 的影响最大（79.15%）。
结论/对实践的意义：本研究检验了因果 Braden 自助模型在 SLE 女性中的适用性，并为干预活动的设计提供了依据。
