血友病性关节炎患者自我管理困境的质性研究

Self-management dilemma in patients with hemophilic arthropathy:a qualitative study

目的了解血友病性关节炎患者自我管理的困境体验,以期为制订符合患者需求的自我管理干预方案提供参考。方法采用现象学研究法,选取2019年12月—2020年9月北京市某三级甲等医院骨科病房的13例血友病性关节炎患者进行半结构式深入访谈。采用Colaizzi7步分析法分析提炼主题。结果对血友病性关节炎患者自我管理造成困境的原因分为内因和外因2个方面,其中内因包括早期对疾病自我管理不重视、疾病管理知识获取途径存在差异以及经济压力大;同时受到外因如疾病的不确定性、社会支持覆盖范围有限、药物可及性差以及突发公共卫生事件等困扰,最终导致血友病性关节炎患者自我管理状态不佳。结论血友病性关节炎患者自我管理压力大、任务重,仍存在诸多问题和障碍。医护人员可联合照顾者,通过多途径健康教育帮助患者正确认识并执行疾病管理。同时利用远程医疗平台,探索罕见病患者自我管理的新模式。

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 selfmanagement 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.