Purpose of the Review
The current review proposes a theoretical framework to support professionals in collaborating with families in the provision of services for children with fetal alcohol spectrum disorders (FASD). Existing models of family-directed care and family contextual factors relevant to planning interventions were reviewed. This information was adapted and integrated in the context of available evidence regarding the provision of evidence-based approaches for children with FASD and their families.
The proposed theoretical framework integrates a family-directed approach to brain injury model, which includes key components of hope, family expertise, and education/skill building with the social economy model of excluded families. This provides a comprehensive approach to supporting the complex needs of children with FASD and their families.
Specialist services for children with FASD and their families are significantly limited around the world. The proposed model provides a theoretical framework for educating and supporting practitioners and family members, to facilitate collaborative service provision for children with FASD and their families.
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Lange S, Probst C, Gmel G, et al. Global prevalence of fetal alcohol spectrum disorder among children and youth: a systematic review and meta-analysis. JAMA Pediatr. 2017;171(10):948–56.
Popova S, Lange S, Shield K, et al. Prevalence of fetal alcohol spectrum disorder among special subpopulations: a systematic review and meta-analysis. Addiction. 2019;114(7):1150–72.
Mattson SN, Bernes GA, Doyle LR. Fetal alcohol spectrum disorders: a review of the neurobehavioral deficits associated with prenatal alcohol exposure. Alcohol Clin Exp Res. 2019;43(6):1046–62.
Jirikowic T, Gelo J, Astley S. Children and youth with fetal alcohol spectrum disorders: Summary of intervention recommendations after clinical diagnosis. Intellect Dev Disabil. 2010;48(5):330–44.
Bobbitt SA, Baugh LA, Andrew GH, et al. Caregiver needs and stress in caring for individuals with fetal alcohol spectrum disorder. Res Dev Disabil. 2016;55:100–13.
Reid N, Moritz KM. Caregiver and family quality of life for children with fetal alcohol spectrum disorder. Res Dev Disabil. 2019;94:103478.
Paley B, O'Connor MJ, Frankel F, et al. Predictors of stress in parents of children with fetal alcohol spectrum disorders. J Dev Behav Pediatr. 2006;27(5):396–404.
Reid N, Petrenko CLM. Applying a developmental framework to the self-regulatory difficulties of young children with prenatal alcohol exposure: a review. Alcohol Clin Exp Res. 2018;42(6):987–1005.
O'Connor MJ, Kogan N, Findlay R. Prenatal alcohol exposure and attachment behavior in children. Alcohol Clin Exp Res. 2002;26(10):1592–602.
Kambeitz C, Klug MG, Greenmyer J, et al. Association of adverse childhood experiences and neurodevelopmental disorders in people with fetal alcohol spectrum disorders (FASD) and non-FASD controls. BMC Pediatr. 2019;19(1):498.
Price A, Cook PA, Norgate S, et al. Prenatal alcohol exposure and traumatic childhood experiences: a systematic review. Neurosci Biobehav Rev. 2017;2017(80):89–98.
Petrenko CLM, Alto ME. Interventions in fetal alcohol spectrum disorders: an international perspective. Eur J Med Genet. 2017;60(1):79–91.
Reid N, Dawe S, Shelton D, et al. Systematic review of fetal alcohol spectrum disorder interventions across the life span. Alcohol Clin Exp Res. 2015;39(12):2283–95.
Streissguth AP, Bookstein FL, Barr HM, et al. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. J Dev Behav Pediatr. 2004;25(4):228–38.
Jacobson SW, Jacobson JL, Sokol RJ, et al. Maternal age, alcohol abuse history, and quality of parenting as moderators of the effects of prenatal alcohol exposure on 7.5-year intellectual function. Alcohol Clin Exp Res. 2004;28(11):1732–45.
Olson HC, Montague RA. An innovative look at early intervention for children affected by prenatal alcohol exposure. Prenatal alcohol use and FASD: Assessment and new directions in research and multimodal treatment. 2011:64-107
Bertrand J. Interventions for children with fetal alcohol spectrum disorders (FASDs): overview of findings for five innovative research projects. Res Dev Disabil. 2009;30(5):986–1006.
Hanlon-Dearman A, Malik S, Wellwood J, et al. A descriptive study of a community-based home-visiting program with preschool children prenatally exposed to alcohol. J Popul Ther Clin Pharmacol. 2017;24(2):361–e71.
Leenaars LS, Denys K, Henneveld D, et al. The impact of fetal alcohol spectrum disorders on families: evaluation of a family intervention program. Community Ment Health J. 2012;48(4):431–5.
•Fisher A, Bellon M, Lawn S, et al. Family-directed approach to brain injury (FAB) model: a preliminary framework to guide family-directed intervention for individuals with brain injury. Disabil Rehabil. 2019;41(7):854–60 The framework presented in this paper has informed the current review.
Mitchell G, Campbell L. The social economy of excluded families. Child Fam Soc Work. 2011;16(4):422–33.
Durie M. Mauri ora: The dynamics of Māori health: Oxford University Press; 2001.
Joy E, Beddoe L. ACEs, Cultural considerations and ‘common sense’ in Aotearoa New Zealand. Soc Policy Soc. 2019;18(3):491–7.
Petrenko CLM, Alto ME, Hart AR, et al. “I’m doing my part, I just need help from the community”: intervention implications of foster and adoptive parents’ experiences raising children and young adults with FASD. J Fam Nurs. 2019;25(2):314–47.
Chamberlain K, Reid N, Warner J, et al. A qualitative evaluation of caregivers’ experiences, understanding and outcomes following diagnosis of FASD. Res Dev Disabil. 2017;63:99–106.
•Roozen S, Stutterheim SE, Bos AE, et al. Understanding the social stigma of fetal alcohol spectrum disorders: from theory to interventions. Found Sci. 2020; This paper provides a recent narrative review of stigmatization related to FASD. Public stigma was found to be the most common form of stigma studied.
Corrigan PW, Lara JL, Shah BB, et al. The public stigma of birth mothers of children with fetal alcohol spectrum disorders. Alcoholism: Clinical and Experimental Research. 2017;41(6):1166–73.
Choate P, Badry D. Stigma as a dominant discourse in fetal alcohol spectrum disorder. Adv Dual Diagn. 2019;12(1/2):36–52.
Petrenko CL, Tahir N, Mahoney EC, et al. A qualitative assessment of program characteristics for preventing secondary conditions in individuals with fetal alcohol spectrum disorders. J Popul Ther Clin Pharmacol. 2014;21(2):e246–59.
•Biddle Z, O’Callaghan FV, Finlay-Jones AL, et al. Caregivers of children with fetal alcohol spectrum disorder: psychosocial factors and evidence for self-compassion as a potential intervention target. Mindfulness. 2020:1–10 Findings from this study shame and self-compassion were unique contributors to caregiver psychological distress.
Buchanan A. Including the socially excluded: the impact of government policy on vulnerable families and children in need. Br J Soc Work. 2005;37(2):187–207.
Olson HC, Oti R, Gelo J, et al. “Family matters:” fetal alcohol spectrum disorders and the family. Dev Disabil Res Rev. 2009;15(3):235–49.
Snyder CR. Hope theory: Rainbows in the mind. Psychol Inquiry. 2002;13(4):249–75.
Watson SL, Hayes SA, Coons KD, et al. Autism spectrum disorder and fetal alcohol spectrum disorder. Part II: a qualitative comparison of parenting stress. J Intellect Dev Disabil. 2013;38(2):105–13.
Reid N, Dawe S, Harnett P, et al. Feasibility study of a family-focused intervention to improve outcomes for children with FASD. Res Dev Disabil. 2017;67:34–46.
Petrenko CL, Tahir N, Mahoney EC, et al. Prevention of secondary conditions in fetal alcohol spectrum disorders: identification of systems-level barriers. Matern Child Health J. 2014;18(6):1496–505.
Ghielen STS, van Woerkom M, Christina MM. Promoting positive outcomes through strengths interventions: a literature review. J Posit Psychol. 2018;13(6):573–85.
Skorka K, McBryde C, Copley J, et al. Experiences of children with fetal alcohol spectrum disorder and their families: a critical review. Alcohol Clin Exp Res. 2020;44(6):1175–88.
Ownsworth T. Self-identity after brain injury: Psychology Press; 2014.
Kuo DZ, Houtrow AJ, Arango P, et al. Family-centered care: current applications and future directions in pediatric health care. Matern Child Health J. 2012;16(2):297–305.
Wampold BE. How important are the common factors in psychotherapy? An update. World J Psychiatry. 2015;14(3):270–7.
Pelech W, Badry D, Daoust G. It takes a team: improving placement stability among children and youth with Fetal Alcohol Spectrum Disorder in care in Canada. Child Youth Serv Rev. 2013;35(1):120–7.
Miller WR. Motivational interviewing: research, practice, and puzzles. Addict Behav. 1996;21(6):835–42.
Miller WR, Moyers TB. Motivational interviewing and the clinical science of Carl Rogers. J Consult Clin Psychol. 2017;85(8):757.
Strauss C, Taylor BL, Gu J, et al. What is compassion and how can we measure it? A review of definitions and measures. Clin Psychol Rev. 2016;47:15–27.
Cook JL, Green CR, Lilley CM, et al. Fetal alcohol spectrum disorder: a guideline for diagnosis across the lifespan. CMAJ. 2016;188(3):191–7.
Feeney TJ, Ylvisaker M, Rosen BH, et al. Community supports for individuals with challenging behavior after brain injury: an analysis of the New York State Behavioral Resource Project. J Head Trauma Rehabil. 2001;16(1):61–75.
Fisher A, Bellon M, Lawn S, et al. The development of a positive behavior support programme for families following acquired brain injury. Int J Ther Rehabil. 2018;25(10):538–51.
Anderson CM, Freeman KA. Positive behavior support: expanding the application of applied behavior analysis. Behav Anal. 2000;23(1):85–94.
Kable JA, Coles CD, Taddeo E. Socio-cognitive habilitation using the math interactive learning experience program for alcohol-affected children. Alcohol Clin Exp Res. 2007;31(8):1425–34.
Kable JA, Taddeo E, Strickland D, et al. Improving FASD children’s self-regulation: piloting phase 1 of the GoFAR intervention. Child Fam Behav Ther. 2016;38(2):124–41.
Kodituwakku PW. A neurodevelopmental framework for the development of interventions for children with fetal alcohol spectrum disorders. Alcohol. 2010;44(7-8):717-728.
Kable JA, O’Connor MJ, Olson HC, et al. Neurobehavioral disorder associated with prenatal alcohol exposure (ND-PAE): proposed DSM-5 diagnosis. Child Psychiatry Hum Dev. 2016;47(2):335–46.
Wells AM, Chasnoff IJ, Schmidt CA, et al. Neurocognitive habilitation therapy for children with fetal alcohol spectrum disorders: an adaptation of the Alert Program®. Am J Occup Ther. 2012;66(1):24–34.
Nash K, Stevens S, Clairman H, et al. Preliminary findings that a targeted intervention leads to altered brain function in children with fetal alcohol spectrum disorder. Brain Sci. 2018;8(1):7.
Soh DW, Skocic J, Nash K, et al. Self-regulation therapy increases frontal gray matter in children with fetal alcohol spectrum disorder: evaluation by voxel-based morphometry. Front Hum Neurosci. 2015;9:108.
Coles CD, Kable JA, Taddeo E, et al. GoFAR: improving attention, behavior and adaptive functioning in children with fetal alcohol spectrum disorders: Brief report. Dev Neurorehabil. 2018;21(5):345–9.
Fagerlund A, Autti-Rämö I, Kalland M, et al. Adaptive behavior in children and adolescents with foetal alcohol spectrum disorders: a comparison with specific learning disability and typical development. Eur Child Adolesc Psychiatry. 2012;21(4):221–31.
Coles CD, Strickland DC, Padgett L, et al. Games that “work”: Using computer games to teach alcohol-affected children about fire and street safety. Res Dev Disabil. 2007;28(5):518–30.
O'Connor MJ, Frankel F, Paley B, et al. A controlled social skills training for children with fetal alcohol spectrum disorders. J Consult Clin Psychol. 2006;74(4):639.
O'Connor MJ, Laugeson EA, Mogil C, et al. Translation of an evidence-based social skills intervention for children with prenatal alcohol exposure in a community mental health setting. Alcohol Clin Exp Res. 2012;36(1):141–52.
Petrenko CLM, Parr J, Kautz C, et al. A mobile health intervention for fetal alcohol spectrum disorders (Families Moving Forward Connect): development and qualitative evaluation of design and functionalities. JMIR Mhealth Uhealth. 2020;8(4):e14721 This study presents the first app-based intervention for caregivers of children with FASD.undefined.
Hundert AS, Huguet A, Green CR, et al. Usability testing of guided internet-based parent training for challenging behavior in children with Fetal Alcohol Spectrum Disorder (Strongest Families FASD). J Popul Ther Clin Pharmacol. 2016;23(1).
NR received grants from a Creswick Foundation Fellowship. AC received grants from Lotteries Health Research Post-Doctoral Fellowship. HCO received grants from the FASD Bernard Family Trust.
Human and Animal Rights and Informed Consent
This article does not contain any studies with human or animal subjects performed by any of the authors.
Conflict of Interest
Author HCO is the developer of the Families Moving Forward Program, author JK is one of the developers of the GoFAR and MILE programs, and author CP is one of the developers of the FMF Connect App. All other authors declare no competing interests.
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Reid, N., Crawford, A., Petrenko, C. et al. A Family-Directed Approach for Supporting Individuals with Fetal Alcohol Spectrum Disorders. Curr Dev Disord Rep 9, 9–18 (2022). https://doi.org/10.1007/s40474-021-00241-1