Lived experiences of the disease journey among patients with idiopathic pulmonary fibrosis

特发性肺纤维化患者患病体验的研究

Objective:This study aimed to explore the lived experiences of the disease journey and patients'care needs with idiopathic pulmonary fibrosis(IPF).Methods:Face-to-face semi-structured interviews were conducted with a purposive sampling of IPF patients admitted to the department of respiratory medicine in a tertiary hospital in Beijing.Interview data were analyzed using the thematic analysis method.In the end,16 patients were interviewed.Results:Four themes emerged from the qualitative data included the long and confusing journey to reach a diagnosis,living with the disease,understanding the disease and treatment and desire for continuity of care.A series of subthemes were also identified,including uncertainty of diagnosis,delaying the process,living with physical symptoms,living with emotional distress,loss of independence,uncertainty with the prognosis,questioning the cause of the disease,concerning the side effects of treatments,lacking continuity of care,and wanting a better quality ofhealthcare in community hospitals.Conclusions:Based on the findings,there is an urgent need to improve the care delivery to this vulnerable population in China.To meet their health needs,it is of paramount importance to develop effective education programs for health professionals and IPF patients and improve care models of healthcare systems,especially in remote areas,to enhance care continuity in the communities.

目的探讨特发性肺纤维化(idiopathic pulmonary fibrosis,IPF)患者患病的真实体验及其护理需求。方法采用面对面半结构式访谈收集资料。采用目的抽样法选取北京市某三级医院呼吸内科住院的16例IPF患者。访谈资料采用专题分析方法进行分析。结果共获得四个主题,包括确诊过程漫长、与疾病共存、了解疾病与治疗的需求、对延续护理的需求。并提炼出一系列子主题,包括诊断的不确定性和延迟,存在多种身体症状和情绪困扰,失去自主性,对疾病预后不确定,对疾病原因和治疗的不良反应有疑问,缺乏连续性的护理,希望社区医院能有更好的医疗质量。结论根据研究结果,迫切需要改善对这一弱势群体的护理服务。为了满足患者的健康需求,有必要为IPF患者制订有效的教育计划;特别是在偏远地区,应注重改善卫生保健系统护理模式,以提高护理服务的连续性。