Clinical Management Group, Woolcock Institute of Medical Research, University of Sydney, Sydney, Australia
National Health and Medical Research Council Centre for Research Excellence in Severe Asthma, Newcastle, Australia.
Eur Respir J. 2017 Sep 20;50(3). doi: 10.1183/13993003.00765-2017. Print 2017 Sep.
People with severe asthma are thought to face a sizeable daily disease burden. This study aimed to explore the little-known life experiences of people living with severe asthma.Adults with severe asthma were invited for telephone interview. Semistructured interviews were conducted until no new themes emerged. The 25 interviews were recorded, transcribed and analysed thematically.Four themes emerged. 1) "The body as a hindrance": severe asthma placed broad limits on life from daily chores to career, relationships and family life that left interviewees feeling emotionally distressed. 2) "Burden of treatment": participants mostly accepted the need to take treatment, but were particularly concerned about side-effects of oral corticosteroids. 3) "Alone with asthma": interviewees felt misunderstood and alone in their experience of breathlessness and frightening exacerbations; practical and emotional support needs were often lacking and the emotional distress of severe asthma was amplified in those with little support. 4) "Striving to adapt": patients used both positive strategies (acquiring self-management skills) and less positive strategies (avoidance of physical exertion) in the process of adjustment to living with severe asthma.Severe asthma imposes long-term, debilitating burdens and should be considered differently to milder disease. There is an urgent need to improve practical and emotional support services for patients and their carers.
据认为,严重哮喘患者面临相当大的日常疾病负担。本研究旨在探讨鲜为人知的严重哮喘患者的生活经历。邀请严重哮喘患者进行电话访谈。进行半结构化访谈,直到没有出现新的主题。对 25 次访谈进行了记录、转录和主题分析。出现了四个主题。1)“身体的阻碍”:严重哮喘严重限制了日常生活,从日常琐事到职业、人际关系和家庭生活,这让受访者感到情绪困扰。2)“治疗负担”:参与者大多接受了治疗的必要性,但特别关注口服皮质类固醇的副作用。3)“独自面对哮喘”:受访者感到自己的呼吸困难和可怕的恶化经历被误解和孤立;他们经常缺乏实际和情感上的支持,在支持较少的情况下,严重哮喘的情绪困扰会加剧。4)“努力适应”:患者在适应严重哮喘的过程中,既使用了积极的策略(获得自我管理技能),也使用了不太积极的策略(避免体力活动)。严重哮喘会造成长期的、使人虚弱的负担,应该与较轻的疾病区别对待。迫切需要改善患者及其照顾者的实际和情感支持服务。