THE SUBJECTIVE MEANING OF ILLNESS IN SEVERE OTOSCLEROSIS - A DESCRIPTIVE STUDY IN 3 STEPS BASED ON FOCUS GROUP INTERVIEWS AND WRITTEN QUESTIONNAIRE

The aim of this study of otosclerosis patients was to highlight the ci rcumstances specific to an operable middle ear disease and to describe the psychologically unique aspects accompanying this disorder. In a f irst step five subjects participated in four focus group interviews, f rom which emanated a questionnaire answered in a second step by 28 ran domly 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 va lidation. The study results indicate that ear surgery was a very impor tant occurrence in the lives of the patients and a unique aspect was t hat they were burdened by a sense of responsibility for deciding in fa vour of or against the ear surgery and in choosing the time for operat ion. 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 o peration makes others understand how serious the situation is, gives r ise to a sense of sympathy. These factors together may promote adaptat ion to the handicap, or alternately, at least for some persons, may im pede adaptation to the necessary hearing aids. To some individuals hea ring aids were strongly associated with periods of deteriorating heari ng and therefore had negative connotations. Thus the hearing aid was u sed 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 hear ing aid the second best solution. The overall conclusion from this stu dy is that there are specific circumstances of an operable ear disease which have great impact upon quality of life, well-being and adaptati on. The psychological situation is one of instability, feelings of res ponsibility and at times of anxiety. Patients with otosclerosis are so metimes told that they are better off than others with impaired hearin g, because surgery can improve their hearing and because good amplific ation 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 otosclero sis.