Abstract:
BACKGROUND:Congenital heart disease is the most common cause of major congenital anomalies. After prenatal diagnosis effective counseling is crucial. However, little research has been undertaken in determining the most effective techniques. OBJECTIVES:To develop a questionnaire suitable to assess parental needs for counseling. MATERIAL AND METHODS:A questionnaire was developed by pediatric cardiologists, maternal-fetal-medicine specialists and sociologists. Likert scaled and open-ended questions are combined with socio-demographical data. The questionnaire was prospectively pilot-tested on 17 parents. We present first analyses of n=41 parents. RESULTS:Response rate was 89.5%. The dependent variable "effective counseling" was measured in 5 dimensions (transfer of medical information, trust in medical staff, transparency of treatment process, coping resources and perceived situational control). The questionnaire's internal consistency is high (Cronbach's alpha>0.7). First analyses show that 44.7% perceived counseling as successful. Transfer of medical information seems difficult (36.6% success rate). Trust in medical staff was high with 75%. CONCLUSIONS:This newly developed tool measures counseling success in five dimensions. A multidisciplinary approach is recommended as methodological expertise is essential for constructing adequate tests. Preliminary data indicate that transfer of medical information is not easily achieved. Further analyses are needed to identify factors that determine counseling success. HINTERGRUND:Herzfehler sind die häufigsten kongenitalen Fehlbildungen. Nach pränataler Diagnose ist das Aufklärungsgespräch bedeutsam für die Führung der Eltern. Eine Standardisierung der pränatalen Aufklärungsgespräche oder ein validiertes Erhebungsinstrument zum „Aufklärungserfolg“ existieren nicht. Das Ziel der Studie ist die Konstruktion eines geeigneten Fragebogens als Instrument zur Bestimmung des „Aufklärungserfolges“. MATERIAL UND METHODEN:Bei dem angewandten Verfahren handelt es sich um die konfirmatorische Prüfung der abhängigen Variable „Aufklärungserfolg“. Ein Fragebogen wurde gezielt nach interdisziplinärer Kooperation (Pädiatrische Kardiologie, Pränatalmedizin, Soziologie) entwickelt. Die Datenerhebung für die Pilotstudie an n=17 Eltern erfolgte prospektiv. Wir präsentieren erste Ergebnisse von n=41 befragten Eltern. ERGEBNISSE:Die Nettorücklaufrate betrug 89,5%. Die abhängige Variable „Aufklärungserfolg“ wurde in 5 Dimensionen gemessen (Transfer von medizinischem Wissen, Vertrauen in medizinisches Personal, Transparenz des Behandlungsprozesses, Coping-Ressourcen, wahrgenommene Situationskontrolle). Die innere Konsistenz der konstruierten Skala ist gut (Cronbach‘s alpha>0,7). Erste Ergebnisse zeigen, dass 44,7% der Eltern die Beratung als erfolgreich ansahen. Lediglich 36,6% empfanden den Transfer medizinischen Wissens als erfolgreich. Das Vertrauen in medizinisches Personal war hoch (75%). SCHLUSSFOLGERUNG:Die abhängige Variable „Aufklärungserfolg“ wird mit dem konstruierten Fragebogen valide in multiplen Dimensionen gemessen. Methodische Expertise ist essentiell für die Konstruktion adäquater Testinstrumente, dafür ist die Einbeziehung unterschiedlicher Professionen sinnvoll. Weitere Analysen sind erforderlich, um Einflussfaktoren einer erfolgreichen elterlichen Aufklärung zu identifizieren.
journal_name
Klin Padiatrjournal_title
Klinische Padiatrieauthors
Kovacevic A,Simmelbauer A,Starystach S,Elsässer M,Sohn C,Müller A,Bär S,Gorenflo Mdoi
10.1055/a-0633-3331subject
Has Abstractpub_date
2018-09-01 00:00:00pages
251-256issue
5eissn
0300-8630issn
1439-3824journal_volume
230pub_type
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journal_title:Klinische Padiatrie
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