Development of a referral pathway framework for foetal alcohol spectrum disorder in the Pilbara.

INTRODUCTION: This article describes the process of mapping referral pathways to develop a localised resource to enhance the journey to diagnosis, treatment and support for foetal alcohol spectrum disorder (FASD) in a regional community setting. METHODS: Over a 6-month period, a research officer engaged service providers in Port and South Hedland, Western Australia, using participatory action research methods. An iterative process included a service environment scan, interviews with service leaders and refinement of progressive drafts of the pathway through the Hedland FASD Network. A community reference group advised on cultural issues. RESULTS: Referral pathways for interagency sectors (health, education, justice) were developed. Three pathway schematics and a companion four-page referral protocol were endorsed. The pathways were disseminated to all service providers and consensus was reached to trial the pathways within existing service systems. CONCLUSION: The process of referral pathway development provided a service mapping and gapping exercise to facilitate service integration. Evaluation of the resource will be conducted using the RE-AIM framework. The referral pathways template has been adapted and trialled by health and other professionals in several sites across Australia. The model developed for FASD can be applied to other neurodevelopmental disorders.

Overcoming the challenges of caring for a child with foetal alcohol spectrum disorder: a Pilbara community perspective.

Introduction Foetal 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 the prevalence of FASD in high risk populations in Western Australia. Individuals with FASD may experience higher rates of negative outcomes including poor school performance, involvement with the justice system and incarceration, 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, little is known about the experiences of caregivers in a remote Australian context, particularly from an Australian Aboriginal perspective. This study aimed to investigate the experiences of caregivers in a remote Australian context. The findings will be valuable to inform programs at the family, community and broader policy levels 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 Western Australia. 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 30-60 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 that 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.