Assessing the needs of caregivers of children and adolescents with fetal alcohol spectrum disorders: Results from a survey among families and professionals in Germany.

INTRODUCTION: Caring for individuals with fetal alcohol spectrum disorders (FASD) puts a substantial and often life-long burden on affected families. Caregivers' specific needs and demands are, however, not well understood so far. We thus aimed at systematically collecting data on the needs of individuals caring for children and adolescents with FASD. MATERIALS AND METHODS: Between May 2019 and November 2020, a quantitative survey among caregivers and professionals from across Germany was performed. Participants completed a questionnaire collecting information on the perceived support caregivers receive from various sources as well as the current fulfilment of caregivers' needs. Specifically, the fulfilment of a variety of specific needs summarised in five categories was rated by the participants on a scale ranging from 1 (very good) to 6 (insufficient). RESULTS: Both caregivers and professionals rated the overall fulfilment of needs rather poorly (mean: 3.94 and 4.27, respectively). Caregivers indicated needs concerning coordination of support (4.74) and relief services (4.44) to be fulfilled the least while needs in the relief services category also received the lowest average grade among professionals (4.57). The needs that the caregivers regarded as most sufficiently fulfilled were their own knowledge about FASD (mean: 1.95) and their knowledge about the causes of their child's problems (mean: 1.87). CONCLUSIONS: The results of the present study indicate that FASD caregivers are supported insufficiently, while most of their needs remain unmet. Health care planners and providers thus urgently need to identify and implement measures to better address FASD caregivers' needs and demands.

[Fetal alcohol spectrum disorders (FASD) ­ diagnosis, neuropsychological assessment, and symptom-orientated therapy]. / Fetale Alkoholspektrumstörungen ­ Diagnose, neuropsychologische Testung und symptomorientierte Förderung.

According to the GEDA study (Study of Health in Germany), 20 % of all pregnant women show moderate and 8 % risky alcohol consumption. Of the pregnant women, 12 % engage in binge drinking (≥ 5 drinks per occasion less than once per month, 4 % every month and 0.1 % at least every week). According to conservative estimates, approximately 1 % of all children are affected by intrauterine exposure to alcohol. In total, approximately 800,000 million people, thereof 130,000 children, suffer from a fetal alcohol spectrum disorder in Germany. Many of the affected children, however, remain undiagnosed or are properly diagnosed only very late. To date, professionals in the healthcare and social system have not been sufficiently informed about the symptoms and the necessary diagnosis. This review illustrates the medical and psychological possibilities and necessities regarding children and adolescents with FASD. Early diagnosis and living in a supportive and violence-free environment are the most important protective factors for the long-term outcome of patients with FASD.