ZusammenfassungDie Fetale Alkoholspektrumstörung ist eine der häufigsten bei Geburt bestehenden chronischen Erkrankungen, die zum Großteil nicht oder fehldiagnostiziert wird. Dies führt zu inadäquater, ineffektiver Förderung und Therapie der erkrankten Kinder sowie mangelnder Unterstützung der betroffenen Familien. Daraus resultiert nicht nur ein hohes Maß an Sekundärerkrankungen, sondern auch eine Einbuße in der Möglichkeit der Sekundär- und Tertiärprävention bei erkrankten Kindern und betroffenen Familien. Sekundär und Tertiärprävention sind jedoch bei richtiger und rechtzeitiger Diagnose möglich. Die Primärprävention im Bereich Alkoholkonsum in der Schwangerschaft und Fetale Alkoholspektrumstörung muss auch in Zukunft sowohl von medizinischer als auch politischer Seite strukturiert, interdisziplinär und wissenschaftlich basiert geplant und durchgeführt werden. Neben der Aufklärung der Allgemeinbevölkerung ist hierbei die Wissensvermittlung an ÄrztInnen und andere medizinisch-psychologisch-pädagogische Fachkräfte besonders relevant.
BackgroundInadequate coordination between relevant professionals hampers the provision of appropriate care for individuals with fetal alcohol spectrum disorder (FASD). Integrated, multidisciplinary care is thus urgently required. Hence, we aimed at establishing the first university‐bound, interdisciplinary specialist centre for FASD in Germany, systematically collecting data on its utilisation and evaluation by attendees.MethodsAfter our centre started to provide consultation and support services in July 2019 until May 2021, we collected 233 questionnaires on the centre's utilisation (including attendees' sociodemographic characteristics and the topics on which they requested consultation, e.g., general information about FASD, consultation on therapy options, and educational consultation). Ninety‐four of 136 individuals who received consultation at our centre submitted an evaluation questionnaire that recorded attendees' satisfaction with the support they had received (e.g., the extent to which the consultation met their needs).ResultsOf 233 participants who completed the utilisation questionnaire, 81.8% were female, and 56.7% were aged 40 to 60 years. Moreover, 42% were foster parents, while 38% were professionals. Most attendees had questions on FASD in general as well as on a specific child or adolescent with FASD. Almost three quarters of the attendees requested consultation on adequate therapies for FASD patients, while 64% had questions on parenting issues. The overall quality of the consultation was rated very well.DiscussionOur service was used by both caregivers and professionals who reported numerous and complex concerns and needs. Professionally sound and multidisciplinary services are viable instruments to meet those needs, bearing the potential for quick and notable relief among individuals affected. We propose further advancement of networking and coordination between care providers, the expansion of multidisciplinary services, and securing early diagnosis and consistency of care as relevant steps to even better support children and adolescents with FASD and their families in the future.
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