短肠综合征患者家庭肠外营养体验的质性研究

目的 了解短肠综合征患者行家庭肠外营养的真实体验，为临床制订有效的护理干预方案提供依据。 方法 目的抽样法选取12例短肠综合征行家庭肠外营养患者，对其进行半结构式访谈，并用Colaizzi 7步法分析资料。 结果 提炼出3个主题：家庭肠外营养的积极体验（改善营养状况、获得家庭归属感、自我管理意识及能力增强）；家庭肠外营养的消极体验（睡眠障碍、活动受到限制、伴随和/或潜在的并发症、负性心理情绪）；家庭肠外营养患者的需求（对专业医护人员培训及指导的需求、对医疗资源及政策支持的需求）。 结论 医护人员应重视患者的负性体验，通过有效干预方法解决患者在家庭肠外营养支持过程中出现的问题，以保障家庭肠外营养支持顺利安全实施。

Qualitative study of home parenteral nutrition experience in patients with short bowel syndrome

Objective To figure out the real experience of home parenteral nutrition(HPN) in patients with short bowel syndrome, to provide a basis for formulating an effective nursing intervention program. Methods Twelve patients with short bowel syndrome who received HPN therapy were selected by purposive sampling method.Semi-structured interviews were conducted and the data were analyzed by using the Colaizzi 7-step method. Results Three themes were extracted:positive experience of HPN (improved nutritional status, acquired family attachment, enhanced self-management awareness and ability enhancement); negative experiences of HPN (sleep disturbance, activity restriction, concomitant and/or potential complications, negative psychological emotions); demand for HPN (need for training and guidance of health care professionals, need for medical resources and policy support). Conclusion Medical staff should pay attention to the negative experience of patients and solve the problems in the process of HPN through effective interventions, so as to ensure the smooth and safe implementation of HPN.