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

• Published in: European journal of paediatric neurology Vol. 33; pp. 1 - 8
• Main Authors: Weinmann, Tobias, Moder, Judith E., Ordenewitz, Lisa K., Schlueter, Julia, Jung, Jessica, Kerber, Katharina, Giese, Renate M., Kusser, Franziska, Hannibal, Iris, Heinen, Florian, Landgraf, Mirjam N.
• Format: Journal Article
• Language: English
• Published: England Elsevier Ltd 01.07.2021
• Subjects: Caregivers; FASD; Fetal alcohol syndrome; Health services research; Needs assessment; Fetal alcohol syndrome; Caregivers; FASD; Needs assessment; Health services research
• ISSN: 1090-3798; 1532-2130
• DOI: 10.1016/j.ejpn.2021.04.008

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. 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). 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). 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. •Caring for children with FASD constitutes a great challenge for parents.•There is very little research on the needs of families with children with FASD.•Caregivers and professionals rated the fulfilment of needs very poorly in Germany.•There is urgent need for action to improve support for caregivers of FASD patients.