血友病专业护士护理实践现况调查

Current status of nursing practice of hemophilia-specialized nurses

目的了解我国血友病专业护士护理实践状况，探寻目前工作的不足，为促进我国血友病护理发展提供依据。方法于2015年11月7日，在深圳对参加全国血友病护理会议的护理人员进行问卷调查，本次调查涉及全国血友病治疗中心40余家，当场填写世界血友病联盟护理委员会发展的《血友病专业护士调查问卷》，当场收回。本次调查共发放问卷54份，回收有效问卷43份。结果55．8％的护士从事血友病护理的时间少于5年，58．1％的护士每周进行血友病护理工作的时间少于10h，血友病中心对专业护士最低要求为大专学历占55．8％。我国血友病专业护士主要的护理实践内容是患者初诊登记相关内容和自我注射培训（〉50％），更多的专科护理实践内容涉及较少，包括咨询、教育、联络、分诊、体格检查、用药管理、延伸护理、护理研究及临床试验等（20％～50％），管理职能和医嘱职能〈20％。最低的一项护理实践内容是“学校拜访”，仅为4．7％。仅有5家血友病中心开展的护理实践项目达到50％以上，不同工作年限及不同学历的护士与开展护理实践项目数量呈中度相关性。结论我国血友病专业护士水平参差不齐，还应扩大护理工作范畴，进一步做好血友病患者的信息登记及健康教育工作，提高家庭治疗的培训比例，同时应在中小学校加强血友病的宣传力度。

Objective To explore the status quo of nursing practice of hemophilia-specialized nurses, to find out the shortcomings of current work and to provide the basis for promoting the development of hemophilia-specialized nursing in China. Methods The nursing staff attending the National Nursing Conference on Hemophilia in Shenzhen on November 7, 2015 were investigated with questionnaires. This investigation involved more than 40 hemophilia treatment centers nationwide. The nursing staff were required to fill out the Questionnaire for Hemophilia-Specialized Nurses developed by the Nursing Council, World Hemophilia Federation on the site, which were taken back once completed. Totally 54 questionnaires were handed out, and 43 valid questionnaires were taken back. Results Totally 55.8% of the nurses engaged in hemophilia nursing for less than 5 years, and 58.1% of them spent less than 10 hours on hemophilia nursing per week. And the number of hemophilia centers whose requirement for specialized nurses was a college degree accounted for 55.8%. The major nursing practice of China＇s hemophilia-specialized nurses included preliminary diagnosis-related content and self-injection training（〉 50%）, and involved less specialized nursing practice, including consuhancy, education, liaison, triage, physical examination, medication management, extended care, nursing research and clinical trial （20%-50%）. The functions of management and medical advice accounted for 〈 20%, and the least nursing practice was ＂school visit＂, accounting for only 4.7%. Merely 5 hemophilia centers carried out nursing practice items that accounted for over 50%. Nurses with different working years and education backgrounds were moderately correlated with the number of carried out nursing practice items. Conclusions The hemophilia-specialized nurses in China has an uneven level, and they need to expand the nursing work, do better in information registration and health education for hemophilia patients, improve the training proportion of family treatment, and meanwhile strengthen the publicity of hemophilia in elementary and middle schools.