THE PROCESS OF DIAGNOSIS BY SPINA-BIFIDA - PERCEPTIONS OF PARENTS ANDCLINICAL PERSONNEL

This is a study of the subjective experience of communicative understa nding between parents of spina bifida children and medical personnel. Research methods include content analysis of data from semi-structured interviews, a questionnaire to explore the quality of life as well as conversation analytic reconstructions of the ''real'' communication p rocesses during outpatient clinic which were tape-recorded. Results of the interviews with parents and personnel demonstrate the great relev ance of the quality of the relationship in the providing of clinical c are; equally important is that the relationship between parents and cl inic staff is shaped in a reciprocal fashion. Discrepancies in the per ceptions of parents and personnel indicate individual reality construc tions. It is desirable that parents and personnel construct a shared r eality during their interaction. With respect to this end, the emotion al resources of personnel should be regarded as competences and drawn upon more systematically. The parents' role as ''experts'' should be v alidated and their active participation in the construction of the com municative situation - which is normally determined by the institution - should be encouraged.