Abstract

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 consultancy, 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. Key words: Hemophilia; Specialized nurse; Specialized nursing practice

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