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A Family-Directed Approach for Supporting Individuals with Fetal Alcohol Spectrum Disorders

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Abstract

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.

Recent Findings

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.

Conclusions

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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References

Papers of particular interest, published recently, have been highlighted as: • Of importance

  1. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  2. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  3. 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.

    PubMed  PubMed Central  Google Scholar 

  4. 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.

    Article  PubMed  Google Scholar 

  5. 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.

    Article  PubMed  Google Scholar 

  6. Reid N, Moritz KM. Caregiver and family quality of life for children with fetal alcohol spectrum disorder. Res Dev Disabil. 2019;94:103478.

    Article  CAS  PubMed  Google Scholar 

  7. 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.

    Article  PubMed  Google Scholar 

  8. 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.

    Article  PubMed  Google Scholar 

  9. O'Connor MJ, Kogan N, Findlay R. Prenatal alcohol exposure and attachment behavior in children. Alcohol Clin Exp Res. 2002;26(10):1592–602.

    Article  PubMed  Google Scholar 

  10. 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.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  11. 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.

    Article  Google Scholar 

  12. Petrenko CLM, Alto ME. Interventions in fetal alcohol spectrum disorders: an international perspective. Eur J Med Genet. 2017;60(1):79–91.

    Article  PubMed  Google Scholar 

  13. 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.

    Article  PubMed  Google Scholar 

  14. 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.

    Article  PubMed  Google Scholar 

  15. 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.

    Article  PubMed  Google Scholar 

  16. 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

  17. 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.

    Article  PubMed  Google Scholar 

  18. 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.

    Google Scholar 

  19. 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.

    Article  PubMed  Google Scholar 

  20. •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.

  21. Mitchell G, Campbell L. The social economy of excluded families. Child Fam Soc Work. 2011;16(4):422–33.

    Article  Google Scholar 

  22. Durie M. Mauri ora: The dynamics of Māori health: Oxford University Press; 2001.

    Google Scholar 

  23. Joy E, Beddoe L. ACEs, Cultural considerations and ‘common sense’ in Aotearoa New Zealand. Soc Policy Soc. 2019;18(3):491–7.

    Article  Google Scholar 

  24. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  25. 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.

    Article  PubMed  Google Scholar 

  26. •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.

  27. 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.

    Article  Google Scholar 

  28. Choate P, Badry D. Stigma as a dominant discourse in fetal alcohol spectrum disorder. Adv Dual Diagn. 2019;12(1/2):36–52.

    Article  Google Scholar 

  29. 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.

    PubMed Central  Google Scholar 

  30. •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.

  31. 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.

    Article  Google Scholar 

  32. 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.

    Article  PubMed  Google Scholar 

  33. Snyder CR. Hope theory: Rainbows in the mind. Psychol Inquiry. 2002;13(4):249–75.

    Article  Google Scholar 

  34. 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.

    Article  PubMed  Google Scholar 

  35. 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.

    Article  PubMed  Google Scholar 

  36. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Ghielen STS, van Woerkom M, Christina MM. Promoting positive outcomes through strengths interventions: a literature review. J Posit Psychol. 2018;13(6):573–85.

    Google Scholar 

  38. 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.

    Article  PubMed  Google Scholar 

  39. Ownsworth T. Self-identity after brain injury: Psychology Press; 2014.

    Book  Google Scholar 

  40. 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.

    Article  PubMed  Google Scholar 

  41. Wampold BE. How important are the common factors in psychotherapy? An update. World J Psychiatry. 2015;14(3):270–7.

    Article  Google Scholar 

  42. 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.

    Article  Google Scholar 

  43. Miller WR. Motivational interviewing: research, practice, and puzzles. Addict Behav. 1996;21(6):835–42.

    Article  CAS  PubMed  Google Scholar 

  44. Miller WR, Moyers TB. Motivational interviewing and the clinical science of Carl Rogers. J Consult Clin Psychol. 2017;85(8):757.

    Article  PubMed  Google Scholar 

  45. 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.

    Article  PubMed  Google Scholar 

  46. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  47. 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.

    Article  CAS  PubMed  Google Scholar 

  48. 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.

    Article  Google Scholar 

  49. Anderson CM, Freeman KA. Positive behavior support: expanding the application of applied behavior analysis. Behav Anal. 2000;23(1):85–94.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  50. 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.

    Article  PubMed  Google Scholar 

  51. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  52. Kodituwakku PW. A neurodevelopmental framework for the development of interventions for children with fetal alcohol spectrum disorders. Alcohol. 2010;44(7-8):717-728.

  53. 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.

    Article  PubMed  Google Scholar 

  54. 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.

    Article  PubMed  Google Scholar 

  55. 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.

    Article  Google Scholar 

  56. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  57. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  58. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  59. 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.

    Article  PubMed  Google Scholar 

  60. 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.

    Article  PubMed  Google Scholar 

  61. 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.

    Article  PubMed  Google Scholar 

  62. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  63. 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).

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Funding

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.

Author information

Authors and Affiliations

  1. University of Queensland, Child Health Research Centre, 62 Graham Street, South Brisbane, Queensland, 4101, Australia

    Natasha Reid & Andi Crawford

  2. Department of Psychological Medicine, Faculty of Medical and Health Science, The University of Auckland, Auckland, 1142, New Zealand

    Andi Crawford

  3. Te Ara Manapou, Parenting and Pregnancy Service, Hawke’s Bay District Health Board, Hawke’s Bay, New Zealand

    Andi Crawford

  4. Mt. Hope Family Center, University of Rochester, Rochester, NY, USA

    Christie Petrenko

  5. Departments of Psychiatry and Behavioral Science and Pediatrics, Emory University School of Medicine, Atlanta, GA, USA

    Julie Kable

  6. Department of Psychiatry and Behavioral Sciences, University of Washington School of Medicine and Seattle Children’s Research Institute, Seattle, WA, USA

    Heather Carmichael Olson

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  1. Natasha Reid
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  2. Andi Crawford
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  3. Christie Petrenko
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  4. Julie Kable
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  5. Heather Carmichael Olson
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Corresponding author

Correspondence to Natasha Reid.

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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

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