Eriksson-Mangold M, Erlandsson S I, Jansson G
Psychology Department, Göteborg University, Regional Hospital of Bords, Sweden.
Scand Audiol Suppl. 1996;43:34-44.
The aim of this study of otosclerosis patients was to highlight the circumstances specific to an operable middle ear disease and to describe the psychologically unique aspects accompanying this disorder. In a first step five subjects participated in four focus group interviews, from which emanated a questionnaire answered in a second step by 28 randomly chosen subjects. Finally a second series of supplementary focus interviews were conducted with another group of subjects, after which the interview material was subjected to code-mapping, agreement and validation. The study results indicate that ear surgery was a very important occurrence in the lives of the patients and a unique aspect was that they were burdened by a sense of responsibility for deciding in favour of or against the ear surgery and in choosing the time for operation. An event as tangible as an operation impacts on the individual's psychological processing of the fact that one of his or her senses is damaged. The message to the person's surroundings is very clear: the operation makes others understand how serious the situation is, gives rise to a sense of sympathy. These factors together may promote adaptation to the handicap, or alternately, at least for some persons, may impede adaptation to the necessary hearing aids. To some individuals hearing aids were strongly associated with periods of deteriorating hearing and therefore had negative connotations. Thus the hearing aid was used while waiting for surgery or instead of surgery. The constant hope of regaining one's hearing through ear surgery, although not totally realistic in these cases of severe otosclerosis, always makes the hearing aid the second best solution. The overall conclusion from this study is that there are specific circumstances of an operable ear disease which have great impact upon quality of life, well-being and adaptation. The psychological situation is one of instability, feelings of responsibility and at times of anxiety. Patients with otosclerosis are sometimes told that they are better off than others with impaired hearing, because surgery can improve their hearing and because good amplification through hearing aids can be achieved in persons with conductive hearing losses. It is our hope that this study has helped to provide a fuller picture of the facts of life for persons with severe otosclerosis.
这项针对耳硬化症患者的研究旨在突出可手术治疗的中耳疾病的特定情况，并描述伴随该疾病的独特心理方面。第一步，五名受试者参与了四次焦点小组访谈，由此产生了一份问卷，第二步由28名随机挑选的受试者回答。最后，对另一组受试者进行了第二轮补充焦点访谈，之后对访谈材料进行了编码映射、一致性检验和验证。研究结果表明，耳部手术在患者的生活中是一件非常重要的事情，一个独特的方面是，他们因决定支持或反对耳部手术以及选择手术时间而背负着责任感。像手术这样切实的事件会影响个体对其一种感官受损这一事实的心理处理。向周围人的传达的信息非常明确：手术让其他人明白情况有多严重，引发同情之感。这些因素共同作用可能促进对残疾的适应，或者相反，至少对某些人来说，可能阻碍对必要助听器的适应。对一些人来说，助听器与听力下降时期密切相关，因此具有负面含义。因此，在等待手术期间或代替手术使用助听器。尽管在这些严重耳硬化症病例中，通过耳部手术恢复听力的持续希望并不完全现实，但这始终使助听器成为次优选择。这项研究的总体结论是，可手术治疗的耳部疾病存在特定情况，对生活质量、幸福感和适应能力有重大影响。心理状况是不稳定、有责任感，有时还会焦虑。耳硬化症患者有时被告知，他们比其他听力受损者情况更好，因为手术可以改善听力，而且传导性听力损失患者可以通过助听器实现良好的听力放大。我们希望这项研究有助于更全面地呈现重度耳硬化症患者的生活实际情况。
