Original Research

Overcoming the challenges of caring for a child with Fetal Alcohol Spectrum disorder: a Pilbara community perspective

AUTHORS

Tracy McRae1 MPH, Research Officer *

Emma Adams2 MPH, Research Officer

Elaine Clifton3 Dip Bus (Acc) , Community Researcher

James Fitzpatrick4 PhD, NHMRC Career Development Fellow

Kaashifah Bruce5 MPH, Project Manager

June Councillor6 BSc, Chief Executive Officer

Glenn Pearson7 BA (Ed), Head of Aboriginal Health

Roz Walker8 PhD, Head of Aboriginal Maternal Health and Child Development

AFFILIATIONS

1, 2, 3, 5, 7 Telethon Kids Institute, PO Box 855, West Perth, Perth, WA 6872, Australia

4, 8 Telethon Kids Institute, PO Box 855, West Perth, Perth, WA 6872, Australia; and University of Western Australia, 35 Stirling Highway, Perth, WA 6009, Australia

6 Wirraka Maya Health Service Aboriginal Corporation, 17 Hamilton Road, South Hedland, WA 6722, Australia

ACCEPTED: 2 August 2019


early abstract:

Introduction: Fetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental impairment that may result in individuals experiencing poor development, cognitive issues and disruptive behaviours.  In Australia, the prevalence of FASD is unknown however, two studies have revealed prevalence of FASD in high risk populations in Western Australia (WA). Individuals with FASD may experience higher rates of negative outcomes including poor school performance, trouble with the law, substance use and are at risk of being placed in out-of-home care.  Caregivers of children with FASD can experience challenges and high levels of stress due to the disruptive behaviours displayed by many children diagnosed with FASD.  Whilst experiences of caregivers raising children with FASD have been documented globally, there is little known regarding the experiences of caregivers in a remote Australian context and particularly, from an Australian Aboriginal perspective.  This study aims to investigate the experiences of caregivers in a remote Australian context. The findings will be valuable for informing programs at the family, community and broader policy level that can help enhance children’s development and wellbeing.

Methods: Participants (n=7) in this qualitative study were recruited through a FASD diagnostic clinic and family support organisation in the Port Hedland region of WA.  Eligible participants were previous or current caregivers of children with a FASD diagnosis or risk of FASD and provided informed consent before participating in semi-structured interviews using a phenomenological approach.  The interviews were 30 to 60 minutes in duration and were audio recorded and transcribed verbatim using NVivo 11 computer software with all identifying information removed.  

Results: The caregivers provided rich, descriptive narratives revealing the challenges and stress they experienced when they first started caring for their child with FASD.  Caregivers articulated how they developed and adapted strategies through trial and error that enabled them to better manage disruptive behaviours and maintain a stable, calm environment. A thematic analysis revealed four major themes: the importance of routine and structure for the child and family, the importance of family support, the benefits of peer support groups and various social issues impacting children’s development. Maintaining routine and structure had helped many caregivers mitigate stress and reduce disruptive behaviours and family support allowed caregivers some respite whilst ensuring children remained connected to their biological families and culture.  The caregivers also shared that peer support groups would be beneficial to share stories and strategies with others experiencing similar circumstances.  Broader societal issues requiring attention at the community level were discussed, in addition to caregivers having awareness of the complexities impacting the children’s biological families.

Conclusion: The caregivers in this study have gained valuable knowledge and wisdom through caring for a child with FASD which can benefit health professionals and the broader community.   Whilst the caregivers in this study have overcome challenges through developing and adapting their own strategies, support services providing tailored programs for caregivers when they first start caring for a child with FASD would be beneficial.  Furthermore, formal respite was not utilised by the caregivers in this study due to safety issues, inconsistent parenting and interrupted routines, therefore investigation into training respite caregivers in the area of FASD would be beneficial. Furthermore, respite services should consider provisions to include extended families and kinship relationships in a formal context to enable ongoing cultural and family connection, consistent parenting strategies and routines.