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. Severe asthma imposes long-term, debilitating burdens requiring additional support services for patients and carers http://ow.ly/grpE30db5FR

中文翻译：

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“我在生活的方方面面都迷失了”：严重哮喘的隐藏负担

患有严重哮喘的人被认为每天都面临着相当大的疾病负担。本研究旨在探索重度哮喘患者鲜为人知的生活经历。邀请患有严重哮喘的成年人进行电话采访。进行半结构化访谈，直到没有新的主题出现。对 25 次访谈进行了记录、转录和专题分析。出现了四个主题。1）“身体的障碍”：严重的哮喘对从日常家务到职业、人际关系和家庭生活的生活施加了广泛的限制，让受访者感到情绪困扰。2）“治疗负担”：参与者大多接受需要治疗，但特别担心口服皮质类固醇的副作用。3）“单独哮喘”：受访者在呼吸困难和可怕的病情恶化的经历中感到被误解和孤独；实际和情感支持需求往往缺乏，严重哮喘的情绪困扰在那些缺乏支持的人中被放大。4）“努力适应”：患者在适应重度哮喘的过程中，采用积极的策略（获得自我管理技能）和消极的策略（避免体力消耗）。重度哮喘会带来长期的、使人衰弱的负担，应与较轻的疾病区别对待。迫切需要改善为患者及其护理人员提供的实用和情感支持服务。严重的哮喘会带来长期的、使人衰弱的负担，需要为患者和护理人员提供额外的支持服务 http://ow.ly/grpE30db5FR 实际和情感支持需求往往缺乏，严重哮喘的情绪困扰在那些缺乏支持的人中被放大。4）“努力适应”：患者在适应重度哮喘的过程中，采用积极的策略（获得自我管理技能）和消极的策略（避免体力消耗）。重度哮喘会带来长期的、使人衰弱的负担，应与较轻的疾病区别对待。迫切需要改善为患者及其护理人员提供的实用和情感支持服务。严重的哮喘会带来长期的、使人衰弱的负担，需要为患者和护理人员提供额外的支持服务 http://ow.ly/grpE30db5FR 实际和情感上的支持需求往往缺乏，严重哮喘的情绪困扰在那些几乎没有支持的人中被放大。4）“努力适应”：患者在适应重度哮喘的过程中，采用积极的策略（获得自我管理技能）和消极的策略（避免体力消耗）。重度哮喘会带来长期的、使人衰弱的负担，应与较轻的疾病区别对待。迫切需要改善为患者及其护理人员提供的实用和情感支持服务。严重的哮喘会带来长期的、使人衰弱的负担，需要为患者和护理人员提供额外的支持服务 http://ow.ly/grpE30db5FR 在适应重度哮喘患者的过程中，患者同时使用积极策略（获得自我管理技能）和不太积极的策略（避免体力消耗）。重度哮喘会带来长期的、使人衰弱的负担，应与较轻的疾病区别对待。迫切需要改善为患者及其护理人员提供的实用和情感支持服务。严重的哮喘会带来长期的、使人衰弱的负担，需要为患者和护理人员提供额外的支持服务 http://ow.ly/grpE30db5FR 在适应重度哮喘患者的过程中，患者同时使用积极策略（获得自我管理技能）和不太积极的策略（避免体力消耗）。重度哮喘会带来长期的、使人衰弱的负担，应与较轻的疾病区别对待。迫切需要改善为患者及其护理人员提供的实用和情感支持服务。严重的哮喘会带来长期的、使人衰弱的负担，需要为患者和护理人员提供额外的支持服务 http://ow.ly/grpE30db5FR 迫切需要改善为患者及其护理人员提供的实用和情感支持服务。严重的哮喘会带来长期的、使人衰弱的负担，需要为患者和护理人员提供额外的支持服务 http://ow.ly/grpE30db5FR 迫切需要改善为患者及其护理人员提供的实用和情感支持服务。严重的哮喘会带来长期的、使人衰弱的负担，需要为患者和护理人员提供额外的支持服务 http://ow.ly/grpE30db5FR