An Australian online training and support program for caregivers of children and youth with Fetal Alcohol Spectrum Disorder: Families linking with families

References

• Badry, D. (2013). The FASD (fetal alcohol spectrum disorder) community of practice (CoP) in Alberta human services: Leading from within initiative. Final Report, Alberta Centre for Child, Family & Community Research.
   Google Scholar
• Badry, D., & Hickey, J. (2018). I am a caregiver for a person with FASD: Caregiver resource guide. https://canfasd.ca/wp-content/uploads/2018/03/Caregiver-Resource-Guide-FASD-March-2018.pdf
   Google Scholar
• Bertrand, J. (2009). Interventions for children with fetal alcohol spectrum disorders (FASDs): Overview of findings for five innovative research projects. Research in Developmental Disabilities, 30(2009), 986–1006. https://doi.org/10.1016/j.ridd.2009.02.003
   PubMedGoogle Scholar
• Calgary Fetal Alcohol Network. (2016). Best and emerging practices for individuals and families affected by FASD throughout the lifespan. Final Report, Calgary Fetal Alcohol Network, Calgary, Canada. https://www.mycfan.ca/community-impact
   Google Scholar
• Chamberlain, K., Reid, N., Warner, J., Shelton, D., & Dawe, S. (2017). A qualitative evaluation of caregivers’ experiences, understanding and outcomes following diagnosis of FASD. Research in Developmental Disabilities, 63(1), 99–106. https://doi.org/10.1016/j.ridd.2016.06.007
   PubMedGoogle Scholar
• Chapman, R., & Carel, H. (2022). Neurodiversity, epistemic injustice, and the good human life. Journal of Social Philosophy, 53(4), 614–631. https://onlinelibrary.wiley.com/doi/10.1111josp.12456
   Web of Science ®Google Scholar
• Degener, T. (2016). Disability in a human rights context. Laws, 5(3), 35–24. https://doi.org/10.3390/laws5030035
   Google Scholar
• Devine, E. (n.d.). Brain first parenting. https://www.eileendevine.com/brain-first-parenting
   Google Scholar
• Evensen, D. (1994). Integrated active learning and the child with FAS/FAE: Help for tired teachers. Paper presented at the FAS/FAE workshop, Rapid City, South Dakota. July 1994.
   Google Scholar
• FASD Coalition. (n.d.). Ten brain domains (functions) affected by FASD. [fact sheet]. https://www.fasdcoalition.ca/wp-content/uploads/2016/10/Ten-Brain-Domains.pdf
   Google Scholar
• FASD Success. (n.d.). FASD success show. https://www.fasdsuccess.com
   Google Scholar
• Gibbs, A. (2019). An evidence-based training and support course for caregivers of children with foetal alcohol spectrum disorder (FASD) in New Zealand. Advances in Dual Diagnosis, 12(1/2), 73–84. https://doi.org/10.1108/ADD-10-2018-0013
   Web of Science ®Google Scholar
• Gibbs, A. (2021). The health and wellbeing of caregivers and the perspectives of stakeholders on living with FASD. Presentation at the FASD-CAN annual Hui: Action in Aotearoa, Christchurch, NZ. October 30, 2021. https://www.fasd-can.org.nz/2021_fasd_can_annual_hui_presentations
   Google Scholar
• Gibbs, A., Bagley, K., Badry, D., & Gollner, V. (2020b). Foetal alcohol spectrum disorder: Effective helping responses from social workers. International Social Work, 63(4), 496–509. https://doi.org/10.1177/0020872818804032
   Web of Science ®Google Scholar
• Gibbs, A., Harrington, S., Brooks, C., Dedman, C., & Robinson, C. (2020a). ‘Getting on with it’: A course by caregivers, for caregivers – pilot overview and evaluation report. NOFASD Australia. https://www.nofasd.org.au/wp-content/uploads/2020/07/GOWI-Evaluation-Report.pdf
   Google Scholar
• Goodley, D., & Runswick-Cole, K. (2016). Becoming dishuman: Thinking about the human through dis/ability. Discourse: Studies in the Cultural Politics of Education, 37(1), 1–15. https://doi.org/10.1080/01596306.2014.930021
   Web of Science ®Google Scholar
• Healthcare Improvement Scotland. (2019). The experiences of caregivers looking after individuals with fetal alcohol spectrum disorder. Healthcare Improvement Scotland. NHS Scotland. https://www.sign.ac.uk/assets/a_rapid_synthesis_of_qualitative_studies.pdf
   Google Scholar
• Hunter, K. (2023). Life with FASD: Caregiver training online. https://www.fasd-can.org.nz/life_with_fasd_training_online_2023?utm_campaign=april_news_clone_for_web&utm_medium=email&utm_source=fasdcan
   Google Scholar
• JumpStart Psychology. (n.d.). https://www.jumpstartpsychology.com
   Google Scholar
• Kable, J., Coles, C., Strickland, D., & Taddeo, E. (2012). Comparing the effectiveness of on-line versus in-person caregiver education and training for behavioral regulation in families of children with FASD. International Journal of Mental Health and Addiction, 10(6), 791–803. https://doi.org/10.1007/s11469-012-9376-3
   PubMed Web of Science ®Google Scholar
• Kapasi, A., & Brown, J. (2017). Strengths of caregivers raising a child with foetal alcohol spectrum disorder. Child & Family Social Work, 22(2), 721–730. https://onlinelibrary.wiley.com/doi/pdf/10.1111cfs.12288
   Web of Science ®Google Scholar
• Leenaars, L., Denys, K., Henneveld, D., & Rasmussen, C. (2012). The impact of fetal alcohol spectrum disorders on families: Evaluation of a family intervention program. Community Mental Health Journal, 48(4), 431–435. https://doi.org/10.1007/s10597-011-9425-6
   PubMed Web of Science ®Google Scholar
• Malbin, D. (2009). Trying differently rather than harder: Fetal alcohol spectrum disorders (2nd ed.). FASCETS.
   Google Scholar
• Mattson, S., Crocker, N., & Nguyen, T. (2011). Fetal alcohol spectrum disorders: Neuropsychological and behavioral features. Neuropsychology Review, 21(2), 81–101. https://doi.org/10.1007/s11065-011-9167-9
   PubMed Web of Science ®Google Scholar
• Mohamed, Z., Carlisle, A., Livesey, C., & Mukherjee, R. (2020). Carer stress in fetal alcohol spectrum disorders: The implications of data from the UK national specialist FASD clinic for training carers. Adoption & Fostering, 44(3), 242–254. https://doi.org/10.1177/0308575920945112
   Web of Science ®Google Scholar
• Olson, H. C., Oti, R., Gelo, J., & Beck, S. (2009). Family matters: Fetal alcohol spectrum disorders and the family. Developmental Disabilities Research Reviews, 15(3), 235–249. https://doi.org/10.1002/ddrr.65
   PubMed Web of Science ®Google Scholar
• Peadon, E., Rhys-Jones, B., Bower, C., & Elliot, E. (2009). Systematic review of interventions for children with fetal alcohol spectrum disorders. BMC Pediatrics, 9(35), 1–9. https://doi.org/10.1186/2F1471-2431-9-35
   PubMedGoogle Scholar
• Pei, J., Flannigan, K., Walls, L., & Rasmussen, C. (2016). Interventions for fetal alcohol spectrum disorder: Meeting needs across the lifespan. International Journal of Neurorehabilitation, 3(1), 176–186. https://doi.org/10.4172/2376-0281.1000192
   Google Scholar
• Petrenko, C., & Alto, M. (2017). Interventions in fetal alcohol spectrum disorders: An international perspective. European Journal of Medical Genetics, 60(1), 79–91. https://doi.org/10.1016/j.ejmg.2016.10.005
   PubMed Web of Science ®Google Scholar
• Petrenko, C., Kautz-Turnbull, C., Roth, A., Parr, J., Tapparello, C., Demir, U., & Olson, H. C. (2021). Initial feasibility of the “families moving forward” connect mobile health intervention for caregivers of children with fetal alcohol spectrum disorders: Mixed method evaluation within a systematic user-centered design approach. JMIR Formative Research, 5(12), e29687. https://doi.org/10.2196/29687
   PubMedGoogle Scholar
• Petrenko, C., Mahoney, E., Tahir, N., & Chin, N. (2014a). A qualitative assessment of program characteristics for preventing secondary conditions in individuals with fetal alcohol spectrum disorders. Journal of Population Therapeutics Clinical Pharmacology, 21(2), e246–e259. https://pubmed.ncbi.nlm.nih.gov/25032710/
   PubMedGoogle Scholar
• Petrenko, C., Pandolfino, M., & Robinson, L. (2017). Findings from the families on track intervention pilot trial for children with fetal alcohol spectrum disorders and their families. Alcoholism: Clinical and Experimental Research, 41(7), 1340–1351. https://doi.org/10.1111/acer.13408
   PubMed Web of Science ®Google Scholar
• Petrenko, C., Tahir, N., Mahoney, E., & Chin, N. (2014b). Prevention of secondary conditions in fetal alcohol spectrum disorders: Identification of systems-level barriers. Maternal and Child Health Journal, 18(6), 1496–1505. https://doi.org/10.1007/s10995-013-1390-y
   PubMed Web of Science ®Google Scholar
• Popova, S., Temple, V., Dozet, D., O’Hanlon, G., Toews, C., & Rehm, Y. (2021). Health, social and legal outcomes of individuals with diagnosed or at risk for fetal alcohol spectrum disorder: Canadian example. Drug and Alcohol Dependence, 219(2021), 108487. https://doi.org/10.1016/j.drugalcdep.2020.108487
   PubMedGoogle Scholar
• Price, A. D., Mukherjee, R. A. S., Webster, A., Tate, D., Allely, C. S., Brown, S., Buckard, J., Burd, L., Butcher, S., Shields, J., & Cook, P. A. (2023). Development and pre-feasibility testing of SPECIFiC: A psychoeducation program for caregivers of children with fetal alcohol spectrum disorder (FASD). Journal of Child and Family Studies, https://doi.org/10.1007/s10826-023-02637-6
   Web of Science ®Google Scholar
• Reid, N., Dawe, S., Shelton, D., Harnett, P., Warner, J., Armstrong, E., LeGros, K., & O’Callaghan, F. (2015). Systematic review of fetal alcohol spectrum disorder interventions across the life span. Alcoholism: Clinical and Experimental Research, 39(12), 2283–2295. https://doi.org/10.1111/acer.12903
   PubMed Web of Science ®Google Scholar
• rffada. (n.d.). Russell Family Fetal Alcohol Disorders Association. https://rffada.org
   Google Scholar
• Rumsby, S. (2022). “I’m parenting a child with an invisible disease” Salford University’s ‘groundbreaking’ research into fetal alcohol spectrum disorder. https://www.salfordnow.co.uk/2022/11/22/im-parenting-a-child-with-an-invisible-disease-salford-university-start-groundbreaking-research-into-fetal-alcohol-spectrum-disorder/
   Google Scholar
• Sanders, J., & Buck, G. (2010). A long journey: Biological and non-biological parents’ experiences raising children with FASD. Journal of Population Therapeutics and Clinical Pharmacology, 17(2), e308–e322. https://www.jptcp.com/index.php/jptcp/article/view/524
   Google Scholar
• Streissguth, A., Barr, H., Kogan, J., & Bookstein, F. (1996). Understanding the occurrence of secondary disabilities in clients with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE). Final report to the Centers for Disease Control and Prevention. University of Washington, Fetal Alcohol and Drug Unit.
   Google Scholar
• The Child and Youth Working Group. (n.d.). Strategies not solutions. www.humanservices.alberta.ca/documents/FAS0040-strategies-not-solutions.pdf
   Google Scholar
• Tremblay, M., Mastrangelo, T., & Pei, J. (2021). Building school capacity to support students with complex needs through the Wellness, Resiliency, and Partnerships (WRaP) Project. Alberta Journal of Educational Research, 67(1), 83–99. https://doi.org/10.11575/ajer.v67i1.56966
   Web of Science ®Google Scholar
• Walker, N. (2013). Throw away the Master’s tools: Liberating ourselves from the pathology paradigm. Neuroqueer. https://neuroqueer.com/throw-away-the-masters-tools/
   Google Scholar
• Watson, E., & Meddings, S. (2019). Peer support in mental health. Red Globe Press.
   Google Scholar
• Whitehurst, T. (2012). Raising a child with foetal alcohol syndrome: Hearing the parent voice. British Journal of Learning Disabilities, 40(3), 187–193. https://doi.org/10.1111/j.1468-3156.2011.00692.x
   Web of Science ®Google Scholar
• Wilson, H., McCormack, J. C., Singh, N., & Chu, J. T. W. (2023). Lived experience of fetal alcohol spectrum disorder: A qualitative scoping review. Developmental Medicine and Child Neurology. Advance online publication. https://onlinelibrary.wiley.com/doi/10.1111dmcn.15761
   Web of Science ®Google Scholar