Need Assessment among Caregivers of Children and Adolescents with Fetal Alcohol Spectrum Disorders: Results of the Nationwide German Survey

Background: The incidence of fetal alcohol spectrum disorder (FASD), resulting from intrauterine alcohol exposure, is estimated at 1.77% of all children. Thereby, FASD is the most common chronic disease present at birth. FASD is a very complex and disabling disorder with affected children having a great need for support in everyday life and social interaction. Caring for children and adolescents with FASD is thus a great challenge and puts a substantial burden on affected families. The aim of the study was to evaluate met and unmet needs of these families.

Methods: Caregivers and professionals across Germany were asked to judge how sufficiently several defined needs of families with children and adolescents are fulfilled. The rating was performed by German school notes ranging from 1 (very good) to 6 (insufficient). The variety of specific needs was summarized in five categories: information, relief services, therapy and support services, coordination, appreciation, and exchange.

Results: Both caregivers (N = 308) and professionals (N = 365) rated the overall fulfillment of needs of families with children with FASD rather poorly (mean: 3.94 and 4.27, respectively). Caregivers indicated needs concerning coordination of support (4.74) and therapy/support measures (4.44) to be fulfilled the least while professionals rated the needs in the relieve services (4.57) and in the therapy/support measures (4.42) as most unmet.

Conclusion: The needs of caregivers of children and adolescent with FASD are not sufficiently met in Germany. Health care planners and providers thus urgently need to identify and implement measures to better address FASD caregivers’ needs and demands.

Publication History

Article published online:
28 October 2021