Evaluation of information and support for parent and carers of children with FASD
What was this research about?
Children in state care represent a vulnerable population of children, who are at risk of developmental delay, learning difficulties and mental health disorders. Because of the association of maternal substance abuse, including alcohol abuse, with child abuse and neglect, these children are also at risk of Fetal Alcohol Spectrum Disorder (FASD). International research reports that the majority of children with a FASD were in foster care or adoptive care. Awareness of the importance of information and resources specific to FASD and appropriate support for foster carers was the catalyst for this project.
The aim of this project was to:
- identify what FASD information and resources foster carers had accessed
- evaluate the current Australian FASD information and resources
- investigate the needs of foter carers with respect to FASD information and resources to support them raising a child living with FASD
We work to ensure that the research we do does not harm others and that the people who participate in the project are treated with respect.
Ethics approval helps to ensure that research complies with established guidelines such as the National Statement on Ethical Conduct in Human Research.
Ethics approval for this project was granted by the University of Western Australian Human Research Ethics Committee
The research commenced in June 2011 and was completed in November 2012.
Who conducted this research?
- Dr Amanda Wilkins: Developmental Paediatrician and Honorary Research Fellow, Telethon Kids Institute, The University of Western Australia
- Ms Heather Jones: Manager FASD Projects, Telethon Kids Institute, The University of Western Australia
- Dr Rochelle Watkins: Research Fellow, Telethon Kids Institute, The University of Western Australia
- Winthrop Research Professor Carol Bower: Senior Principal Research Fellow, Telethon KIds Institute, The University of Western Australia
In line with good governance and community participation in health and medical research we established a Reference Group. Membership of this group included representatives from the following organisations:
- Foster Care Association of Western Australia
- National Organisation for Fetal Alcohol Spectrum Disorders Australia
- South West Foster Families
- WA Department of Health, Child and Adolescent Community Health, Aboriginal Health Team
The Reference Group worked with researchers to:
- assist with the study design, survey development and recruitment
- review and approve the final report to FARE
What did we do?
- 3 focus groups with a total of 26 foster carers in the metropolitan area and a regional centre
- a face to face interview with one foster carer in the metropolitan area
- a paper-based survey of foster carers to evaluate the information and resources they had accessed with input from 10 foster carers
- a review of accessible paper-based, audio-visual and electronic resources specific to Australia
What did we find out?
- The majority of carers gained information on FASD through contact with other carers and attendance at meetings organised by foster care services
- The majority of carers accessed information and resources via the internet rather than print materials
Information specific to a child
- Health professionals were identified as the main source of specific information.
- The barriers in finding specific information related both to gaining access to health professionals and in the quality of information provided by health professionals and Department for Child Protection case workers.
- Carers encountered reluctance by health professionals to discuss FASD as a possible diagnosis because they didn't know enough about the pregnancy and birth history and often had insufficient knowledge and expertise in FASD.
- Carers reported barriers in gaining support related to the knowledge and attitudes of child protection workers, and issues within the care system including departmental 'red tape' and lack of communication with health professionals.
- They also reported barriers to obtaining support related to the knowledge and attitudes of health care providers, the lack of recognition of FASD as a disability, the association of social stigma with a FASD diagnosis and the lack of specific FASD services.
- Some carers reported positive experiences in their relationships with health professionals and praise for the support given by school staff, child protection case workers and disability services, however, positive experiences were much less common than negative ones.
- Overall the carers in the focus groups demonstrated a high level of commitment to the children in their care, but felt that support for their role as carers and for the complex needs of the children were inadequate and this lack of support contributes significantly to carer stress and fatigue.
- The highest priority for focus group participants was someone to listen to them and somewhere to take their children for diagnosis of FASD.
- Carers were hopeful that the diagnosis would enable a plan to be put in place for the child with respect to services required, school support and interventions to prevent secondary disabilities.
- Validating the carer's concerns was seen as a key benefit of diagnosis.
- The carers indicated that their needs for general information about FASD would best be met by face-to-face workshops, testimonials and information on effective interventions based on real life experiences.
- They expressed a preference for audio-visual resources, rather than printed materials and for resources containing Australian content.
As researchers we learned from the women who shared their important knowledge, needs and perspectives as foster carers of children with, or suspected of having a FASD. Their participation in the focus groups made a significant contribution to this project.
How will this research help?
Parents and carers are hopeful that diagnosis will enable a plan to be put in place for their child to gain access to services, school support and interventions to prevent secondary disabilities.
Outcomes from this research
A final report was published in 2013. Read the Final Report.
The report includes information and a list of resources
Read the Summary Report.
There is strong support from parents and carers for Australian resources and information. In collaboration with key stakeholders and organisations we are actively seeking funding to develop the resources identified by foster carers in the project. We will continue to lobby for greater access to diagnostic services and interventions and support for the children and their families.
Since the completion of this project we have:
- conducted 2 interactive workshops in the metropolitan area and regional centre with 17 foster carers attending. Carers' response to the workshops was overwhelmingly positive with participants commenting in the evaluation that it was great to listen to real life stories and gain practical strategies for managing children living with FASD.
- conducted 2 workshops with staff from the Department for Child Protection, with 97% indicating that it was useful and practical, and relevant to their work with children and families.
- sponsored 2 foster carers to attend the Australasian FASD Conference. These carers were able to share their knowledge and practical experiences and strategies with other carers.
This project was funded by the Foundation for Alcohol Research and Education (FARE).