青年强直性脊柱炎患者不同阶段疾病感知特征的质性研究

The Characteristics of Illness Perception in Young Patients with Ankylosing Spondylitis at Different Stages:A Qualitative Study

目的探讨青年强直性脊柱炎(ankylosing spondylitis,AS)患者不同阶段疾病感知的特征。方法2020年9月至2021年2月,目的抽样法选取南京市某三级甲等医院风湿免疫科门诊就诊或住院治疗的15名青年AS患者为研究对象。采用现象学研究方法,对其进行半结构式深度访谈,并运用Colaizzi 7步法对访谈资料进行分析。结果青年AS患者在不同阶段的疾病感知各具不同特点。确诊前:躯体异常症状感知显著、求医经历曲折;确诊后:不良情绪感知突出、多途径寻求疾病信息支持、感知治疗的益处、预后态度过于乐观;康复期:忽视疾病进展风险、怀疑治疗可控性、主动或被动接纳疾病、社会参与水平下降、渴望理解与支持。结论青年AS患者不同阶段的疾病感知存在差异,建议医护人员根据患者不同时期疾病感知的特点,制定针对性的疾病管理方案。

Objective To explore the characteristics of illness perception in young patients with ankylosing spondylitis(AS)at different stages.Methods From September 2020 to February 2021,15 young AS inpatients and outpatients from the Rheumatology and Immunology Department in a tertiary A hospital in Nanjing were selected by objective sampling method.Semi-structured interviews were conducted with the phenomenological method.Data were sorted and analyzed by the Colaizzi analysis method.Results There were different characteristics of disease perception for young AS patients at different stages.In the pre-diagnosis stage,the perception of abnormal somatic symptoms was significant and the experience of seeking medical treatment was tortuous.In the post-diagnosis stage,the perception of bad emotions was prominent and the perception of seeking for information support,treatment benefit and the prognosis outcome were too optimistic.In the convalescence stage,the risk of disease progression was ignored,the controllability of treatment was doubted,the disease itself was accepted actively or passively,the level of social participation declined and the desire for understanding and support increased.Conclusions There are different characteristics of disease perception for young AS patients at different stages.It is suggested that medical staff should formulate disease management plans accordingly.