干燥综合征患者自我管理行为的分析

Analysis of Self-management Behavior in Patients with Sjogren's Syndrome

目的探讨原发性干燥综合征(pri mary sjogren's syndrome,pSS)患者的自我管理行为。方法采用目的抽样法选择不同病情的20例pSS患者,运用深入访谈法收集资料,采用Miles和Huberman内容分析法分析资料。结果通过资料分析,提炼出症状管理、康复运动和锻炼、环境控制、健康生活方式和服药意识等5个主题,以及喝水和休息、按医嘱用药、选择适宜方式锻炼、温、湿度的控制、保持愉悦心情等15个副主题。结论pSS患者能根据自己的经验和知识以及疾病的症状采取适当的自我管理控制行为,但仍需进一步加强医护人员在pSS患者自我管理中的作用,并督促患者家属参与pSS患者的自我管理。

Objective To explore the self-management behaviors of the patients with primary sjogren＇s syndrome（pSS）.Methods Twenty pSS patients with different disease severity were selected using purposive sampling.The medical data was collected by in-depth interview and analyzed by Miles and Huberman content analysis method.Results By the analysis,five subjects were carefully extracted as the following：symptom management,rehabilitation exercises and training,environment control,healthy lifestyle,awareness of taking the medicine.Fifteen subtopics were also listed as drinking of water,rest,medication with medical instruction,physical exercise in proper way,control of temperature and moisture and maintenance of well-being.Conclusion The pSS patients can take appropriate actions to control diseases according to the self experience and knowledge as well as the disease condition and symptom.The role of medical staff in the self-management behavior of pSS patients should be strengthened combined with the supervision of the relatives of pSS patients.