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.

Improving Aboriginal Maternal Health by Strengthening Connection to Culture, Family and Community.

(1) Background: To explore the function of smoking in Aboriginal women's lives from a trauma-informed, women-centred approach in order to inform the design of a culturally meaningful smoking cessation program for women living in the Pilbara, Western Australia; (2) Methods: Qualitative and Community Based Participatory Action Research (CBPAR) was used to discover what Aboriginal women know about smoking, the specific contextual issues that influence their smoking, and what community supports are available to help them quit smoking. Inductive analysis was used to determine key themes; (3) Results: 25 Aboriginal women (smokers, non-smokers, and ex-smokers) participated in focus groups or individual interviews. Women smoked to deal with stress, trauma and for maintaining social connections. Women who stopped smoking did so on their own when the reason was important enough or when they saw alternative ways of living. Creating safe places to bring women together to yarn about women's business and link with health services was identified as critical to support women to stop smoking. Conclusions: Strategies to address smoking need to bring community, culture and health together in a meaningful way for women and their families; build on existing community strengths; and educate communities about the effects of smoking, and health professionals about how to support women to stop smoking.