“我失去了生活的方方面面”：严重哮喘的隐性负担
2017/12/29
摘要
患有严重哮喘的人每天都面临着巨大的疾病负担。这项研究的目的是探索那些患有严重哮喘的人们鲜为人知的生活经历。
我们邀请了有严重哮喘的成年人接受电话采访。我们进行了半结构式访谈，直至没有新的主题出现。我们采访了25位患者，记录并分析了其主题。
大致有4种主题：1）身体是一种累赘: 严重的哮喘给日常生活、事业、人际关系和家庭生活等带来了广泛限制，被采访者因此感到情绪低落。2）治疗是一种负担：被采访者大多接受了按需治疗，但是他们对口服糖皮质激素的副作用尤为关注。3）因哮喘感到孤独：被采访者在发生呼吸困难和急性加重时会感到被误解和孤独；在无助的时候，他们常常缺乏情感上的帮助，哮喘的悲观情绪被放大。4）努力适应：患者在遭受严重哮喘困扰的时候会采取积极策略（获得自我管理技能）和不积极策略（避免体力消耗）。
严重的哮喘可以对人造成长期负担，使人衰竭，应该与其他相对温和的疾病区别对待。现在迫切需要对患者和照顾者提供更实用的情感支持。
“I have lost in every facet of my life”: the hidden burden of severe asthma
Juliet M. Foster, Vanessa M. McDonald, Michael Guo, Helen K. Reddel
European Respiratory Journal 2017 50: 1700765;DOI:10.1183/13993003.00765-2017
Abstract
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.
患有严重哮喘的人每天都面临着巨大的疾病负担。这项研究的目的是探索那些患有严重哮喘的人们鲜为人知的生活经历。
我们邀请了有严重哮喘的成年人接受电话采访。我们进行了半结构式访谈，直至没有新的主题出现。我们采访了25位患者，记录并分析了其主题。
大致有4种主题：1）身体是一种累赘: 严重的哮喘给日常生活、事业、人际关系和家庭生活等带来了广泛限制，被采访者因此感到情绪低落。2）治疗是一种负担：被采访者大多接受了按需治疗，但是他们对口服糖皮质激素的副作用尤为关注。3）因哮喘感到孤独：被采访者在发生呼吸困难和急性加重时会感到被误解和孤独；在无助的时候，他们常常缺乏情感上的帮助，哮喘的悲观情绪被放大。4）努力适应：患者在遭受严重哮喘困扰的时候会采取积极策略（获得自我管理技能）和不积极策略（避免体力消耗）。
严重的哮喘可以对人造成长期负担，使人衰竭，应该与其他相对温和的疾病区别对待。现在迫切需要对患者和照顾者提供更实用的情感支持。
(复旦大学附属中山医院 呼吸科 包晨 摘译 杨冬 审校)
(European Respiratory Journal 201750:1700765;DOI:10.1183/13993003.00765-2017)
(European Respiratory Journal 201750:1700765;DOI:10.1183/13993003.00765-2017)
“I have lost in every facet of my life”: the hidden burden of severe asthma
Juliet M. Foster, Vanessa M. McDonald, Michael Guo, Helen K. Reddel
European Respiratory Journal 2017 50: 1700765;DOI:10.1183/13993003.00765-2017
Abstract
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.
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