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拒绝患病:一项关于哮喘/过敏患者经历的纵向研究。

Refusing to be ill: a longitudinal study of patients' experiences of asthma/allergy.

作者信息

Scherman M Hansson, Dahlgren Lars Owe, Löwhagen Olle

机构信息

Institute of Occupational Therapy and Physiotherapy, The Sahlgrenska Academy at Göteborg University, Sweden.

出版信息

Disabil Rehabil. 2002 Apr 15;24(6):297-307. doi: 10.1080/09638280110087106.

Abstract

PURPOSE

The purpose of this study was to search for a deeper understanding of the ways patients with asthma/allergy experience their illness situation.

METHOD

Thirty patients with a history of airway symptoms on allergen exposure and a positive skin prick test were included in the study. They took part in open-ended interviews in their homes twice at an interval of eight years, according to the phenomenographic approach.

RESULTS

Fourteen different categories of experience were identified: 'knowing for oneself, 'body related', 'environment related', 'psychosomatic', 'magic', 'fatalism', 'compliance with medication', 'alternative medicine', 'health care', 'provocation', 'avoidance', 'normalization', 'normification' and 'pursuing life'. The analysis also showed that these categories, to varying degrees, were an expression of a desire to retain an ordinary healthy identity and its value. The longitudinal results showed that with time the patients distanced themselves from the medical perspective and found their own ways of thinking and acting in relation to their ill health, which is seen as strengthening for the identity.

CONCLUSIONS

The different, individual ways patients with asthma/allergy developed in relation to the illness situation have a preserving effect on the identity, which ought to be considered in patient education and rehabilitation.

摘要

目的

本研究旨在更深入地了解哮喘/过敏患者体验其病情的方式。

方法

本研究纳入了30名有过敏原暴露后气道症状病史且皮肤点刺试验呈阳性的患者。根据现象学方法,他们在家中每隔八年接受两次开放式访谈。

结果

确定了14种不同的体验类别:“自我认知”、“身体相关”、“环境相关”、“身心相关”、“魔法”、“宿命论”、“药物依从性”、“替代医学”、“医疗保健”、“激发因素”、“回避”、“正常化”、“规范化”和“追求生活”。分析还表明,这些类别在不同程度上表达了保留普通健康身份及其价值的愿望。纵向研究结果表明,随着时间的推移,患者从医学角度逐渐疏远,找到了与自身健康问题相关的自己的思考和行动方式,这被视为对身份认同的强化。

结论

哮喘/过敏患者针对病情所形成的不同个体方式对身份认同具有保护作用,在患者教育和康复中应予以考虑。

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