Al-kalemji Abir, Johannesen Helle, Dam Petersen Karin, Sherson David, Baelum Jesper
Department of Occupational and Environmental Health, Odense University Hospital , Odense , Denmark .
J Asthma. 2014 Mar;51(2):209-20. doi: 10.3109/02770903.2013.860162. Epub 2013 Nov 25.
Asthma is a chronic disease with considerable burden on health and economy. Despite growing knowledge about causes and treatment, many patients have uncontrolled asthma, activity and social limitations and reduced quality of life (QOL). Coping with asthma could be developed in a social and scientific context and influenced by personal experience.
To investigate the asthmatic's perspective on asthma and how coping mechanisms with this disease were influenced by health professionals and networks.
Asthma and QOL questionnaires were sent to 1191 individuals, who had participated in a population-based clinical study in 2004. Of the 7271 responders (72.7%), 10 chronic asthmatics (4 males and 6 females) with different asthma severity grades were recruited to in-depth interviews. The results were interpreted according to selected theories, especially Antonovsky's salutogenic theory on how comprehensibility, manageability and meaningfulness contribute to sense of coherence and successful coping with stressor/disease.
Asthma comprehensibility was limited by both the lack of structured information about asthma diagnosis, treatment and prognosis and insufficient follow-up. The informants experimented with what worked and developed individual ways to accomplish satisfactory management. They adjusted their own medication and sometimes stopped prophylactic medicine as they did not detect an immediate effect. Many informants put their asthma into perspective, comparing it to what could have been worse. The unnoticeable development of asthma had probably triggered a gradual adaptation making it more complex for asthmatics to estimate severity. This together with their relative view of asthma might have led to gradual and uncritical accept of bothersome symptoms and reduced the need to seek professional advice or make important changes, e.g. eliminating exposure to irritating agents at work. Avoidance was a recurrent phenomenon as the asthmatics tended to drop physical activities with others instead of improving treatment. Several stated that they did not like to flash their asthma. They had concerns about being labelled as 'inadequate'. Physicians are urged to consider these tendencies and underlying the some of the mechanisms of 'living with asthma' in order to achieve proper asthma treatment and insure their patients' wellbeing.
哮喘是一种给健康和经济带来相当大负担的慢性疾病。尽管对其病因和治疗的认识不断增加，但许多患者的哮喘仍未得到有效控制，存在活动和社交受限以及生活质量（QOL）下降的情况。应对哮喘可能在社会和科学背景下形成，并受个人经历影响。
调查哮喘患者对哮喘的看法以及健康专业人员和社交网络如何影响其应对该疾病的机制。
向1191名曾参与2004年一项基于人群的临床研究的个体发送哮喘和生活质量问卷。在727名回复者（回复率72.7%）中，招募了10名不同哮喘严重程度等级的慢性哮喘患者（4名男性和6名女性）进行深入访谈。根据选定的理论，特别是安东诺夫斯基的健康生成理论，即关于可理解性、可管理性和意义如何有助于连贯感以及成功应对压力源/疾病，对结果进行解读。
哮喘的可理解性受到哮喘诊断、治疗和预后缺乏结构化信息以及随访不足的限制。受访者尝试有效的方法并形成个人方式来实现满意的管理。他们自行调整药物，有时因未察觉到即时效果而停用预防性药物。许多受访者正确看待自己的哮喘，将其与可能更糟糕的情况进行比较。哮喘难以察觉的发展可能引发了逐渐适应，使得哮喘患者更难评估其严重程度。这与他们对哮喘的相对看法可能导致对烦人的症状逐渐不加批判地接受，并减少了寻求专业建议或做出重要改变（如消除工作中接触刺激性物质）的需求。回避是一种反复出现的现象，因为哮喘患者倾向于放弃与他人一起进行体育活动而不是改善治疗。有几位表示他们不喜欢宣扬自己的哮喘。他们担心被贴上“不足”的标签。敦促医生考虑这些倾向以及“与哮喘共存”的一些潜在机制，以实现适当的哮喘治疗并确保患者的健康。
