关键词: 血友病性关节炎, 自我管理, 困境, 矫形外科护理, 质性研究

Abstract:

Objective To further understand the dilemma experience of self-management in patients with hemophilic arthropathy（HA）,so as to provide references for the development of self-management intervention programs that meet the needs of patients. Methods With phenomenological research methods,a semi-structured in-depth interview was conducted among 13 patients with HA who were scheduled to undergo joint replacement surgery in an orthopedic ward of a tertiary Level A hospital in Beijing. Colaizzi 7-step analysis method was used to collect the data,to analyze and refine the theme. Results The self-management difficulty of HA patients mainly includes 2 factors,namely internal factors and external factors. The internal factors include the lack of attention on self-management of disease,differences in knowledge acquisition approaches,and high economic pressure. The external factors include the uncertainty about the disease,limited coverage of social support,poor drug accessibility,and response to the public health emergencies. Conclusion Patients with HA still have many problems and obstacles in self-management. Health care workers can help patients correctly understand and implement disease management through health education in multiple ways,and meanwhile give full play to the role of the family. Furthermore,the telemedicine platform could also be utilized to explore a new mode of disease self-management for patients with rare diseases.

Key words: Hemophilic Arthropathy, Self-Management, Dilemma, Orthopedic Nursing, Qualitative Study