title: [The diagnostic process in spina bifida: parents perception and viewpoint of clinical specialists].
abstract: This is a study of the subjective experience of communicative understanding 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 processes during outpatient clinic which were tape-recorded. Results of the interviews with parents and personnel demonstrate the great relevance of the quality of the relationship in the providing of clinical care; equally important is that the relationship between parents and clinic staff is shaped in a reciprocal fashion. Discrepancies in the perceptions of parents and personnel indicate individual reality constructions. It is desirable that parents and personnel construct a shared reality during their interaction. With respect to this end, the emotional resources of personnel should be regarded as competences and drawn upon more systematically. The parents' role as "experts" should be validated and their active participation in the construction of the communicative situation - which is normally determined by the institution - should be encouraged.
authors.affiliation: Neuropädiatrischen Abteilung, Rudolf Virchow Klinikums, Freien Universität Berlin.
authors.forename: G
authors.initials: G
authors.lastname: Herb
authors.forename: S
authors.initials: S
authors.lastname: Streeck
mesh_terms: D002675:Child, Preschool; D003142:Communication; D003258:Consumer Behavior; D017281:Cost of Illness; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D010290:Parents / Q000523:psychology*; D010348:Patient Care Team; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000523:psychology; D011368:Professional-Family Relations; D016135:Spinal Dysraphism / Q000175:diagnosis / Q000523:psychology*
vernacular_title: Der Diagnoseprozess bei Spina bifida: Elterliche Wahrnehmung und Sicht des klinischen Fachpersonals.