Alcohol use during pregnancy has been associated with a number of adverse pregnancy outcomes including miscarriage, premature birth, still birth and low birth weight. Alcohol exposure in utero can also cause a range of abnormalities which are included under the umbrella term Fetal Alcohol Spectrum Disorders (FASD). There has been limited research undertaken with the families who raise children affected by FASD. In particular there is limited information on the care needs of families and what support services are available and/or required. It is important to have accurate information from families on the level of disability experienced and the issues involved to ensure suitable services are available. This information could also assist in designing and targeting appropriate interventions for families.
Dr Elizabeth Conroy (Research Fellow; Health Services & Outcomes Research Group, University of Western Sydney)
Dr Deborah Loxton (Women's Health Australia, Research Centre for Gender Health and Ageing, University of Newcastle)
Ms Jennifer Powers (Research Centre for Gender Health and Ageing, University of Newcastle)
Ms Sue Miers (National Organisation for Fetal Alcohol Syndrome and Related Disorders - NOFASARD)
Dr Adrian Dunlop (Area Director, Hunter and New England Drug and Alcohol Services)
To examine the experiences and needs of families that care for a child or children with FASD to develop a gold standard for family support.
The project involved semi-structured telephone interviews with parents and carers of individuals affected by FASD.
The interviews highlighted the need for greater awareness of FASD in the community and in services that have contact with affected individuals. Carers reported that when they accessed services people had no or very limited knowledge regarding FASD and that they had to continually educate teachers, health and other professionals about FASD. The lack of facilities or professionals willing and able to diagnose individuals was problematic for many carers, with many reporting it a frustratingly long process. The fact that a FASD diagnosis was not recognised by services to obtain funding for educational assistance was one of the major hurdles for many of the carers. Securing and maintaining funding for support was difficult. Carers reported their children had significant health issues and other diagnoses. Some of the challenges of daily life included the ongoing strain of caring, need for routine and repetition and dealing with aggression. Carers also reported on the positives of caring for their children, including the joy of seeing them improve physically and achieve.
Breen, C. and Burns, L (2012) Improving services to families affected by FASD. Foundation for Alcohol Research and Education, Deakin, ACT. (Access report via 'Publications' below).
Breen, C.*, Burns, L., Conroy, E., Powers, J., Loxton, D., Hutchinson, D., Miers, S., & Dunlop, A. Caring for individuals affected by Fetal Alcohol Spectrum Disorders: Positives, challenges and suggestions for improvement. Australasian Professional Society on Alcohol & other Drugs Scientific Conference, Melbourne, 18-21st November 2012.
There is a lack of information on the impact of FASD on families and the services required to care for children. This study is the first to document the needs of families and this information can be used to inform service requirements and also assist in targeting appropriate interventions.