成人初显期强直性脊柱炎患者自我管理障碍因素的质性研究

Qualitative Study on Self-management Obstacles in Patients with Ankylosing Spondylitis in Emerging Adulthood

目的深入了解成人初显期强直性脊柱炎(AS)患者自我管理的障碍因素,为后期构建成人初显期AS患者自我管理干预方案提供参考。方法2021年2-10月,采用方便抽样方法选取至南京某三级甲等医院风湿免疫科门诊就诊或住院治疗的14例成人初显期AS患者作为研究对象。基于综合转变模型设计访谈提纲,采用描述性现象学研究方法,对其进行面对面半结构式深度访谈,运用Colaizzi 7步法对访谈资料进行分析。结果针对成人初显期AS患者自我管理的障碍因素共提炼出3个主题,7个亚主题。意识阶段缺乏自我管理意愿:自我管理意愿薄弱、自我管理知识与技能欠缺、自我管理行为益处与后果感知不足;动机阶段缺乏健康管理信念:健康管理信念缺失、有效自我管理信息支持不足;行动阶段缺少社会支持与监督:自我管理行为依从性欠佳、自我效能水平低下、家属与医护人员的支持和监督力度减弱。结论医护人员应强化成人初显期AS患者自我管理意识,提升其疾病风险感知水平;拓展专业信息支持途径,帮助其树立正确健康管理信念;同时充分调动社会支持系统,积极探索适合我国国情的成人初显期AS患者疾病管理模式。

Objective To deeply understand the self-management obstacles in patients with ankylosing spondylitis(AS)in emerging adulthood,so as to provide a reference for the development of future selfmanagement intervention protocols for these patients.Methods From February to October 2021,a total of 14 patients were selected by convenience sampling who visited or were hospitalized in the Rheumatology and Immunology Department of a Grade III-A hospital in Nanjing for AS in emerging adulthood.They underwent face-to-face semi-structured in-depth interviews based on the interview outline designed from the Integrated Model of Change and the descriptive phenomenological approach.Then,the interview data were analyzed by Colaizzi's 7-step analysis method.Results A total of 3 themes and 7 sub-themes were extracted address the self-management obstacles in patients with AS in emerging adulthood as follows.Lack of self-management willingness in the awareness stage:weak self-management willingness,lack of self-management knowledge and skills,and insufficient perception of the benefits and consequences of self-management behaviors;lack of health management beliefs in the motivation stage:lack of health management beliefs,and insufficient information support for effective self-management;lack of social support and supervision in the action stage:poor compliance with self-management behaviors,low level of self-efficacy,and weak support and supervision of family members and healthcare providers.Conclusion Healthcare providers should strengthen the self-management awareness of patients with AS in emerging adulthood and improve their perception of disease risk.They should also expand access to professional information so as to help patients establish correct health management beliefs.Furthermore,they should fully mobilize the social support system and actively explore a disease management model for patients with AS in emerging adulthood that aligns with China's realities.