Balancing the story of fetal alcohol spectrum disorder: A narrative review of the literature on strengths

Flannigan, Katherine; Wrath, Andrew J.; Ritter, Chantel; McLachlan, Kaitlyn; Harding, Kelly D.; Campbell, Alanna; Reid, Dorothy; Pei, Jacqueline

doi:10.1111/acer.14733

Cited by 47 publications

(54 citation statements)

References 70 publications

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“…Bullying was identified as one of the most significant relational level factors for youth in this study. Although individuals with FASD are often reported to be highly social and inclined toward human connection ( 29 ), they may also struggle with desirable social skills, understanding social expectations, making friends, and picking up on cues associated with bullying ( 27 , 58 , 59 ). Nonetheless, although caregivers in this study reported that their children and youth experienced social isolation and marginalization at times, some youth with FASD also had strong and reliable peer groups of genuine friends.…”

Section: Discussionmentioning

confidence: 99%

“…Research on caregiver experiences of children and youth with FASD suggests that they often face challenges in self-care and the many challenges in caring for children with FASD has an effect on family relationships and contributes to social isolation ( 27 ). However, many families of individuals with FASD also show remarkable adaptation and resilience and are able to articulate strengths and values of their families ( 24 , 28 , 29 ).…”

Section: Introductionmentioning

confidence: 99%

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Caregivers' experiences and perceptions of suicidality among their children and youth with fetal alcohol spectrum disorder

et al. 2022

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Individuals with Fetal Alcohol Spectrum Disorder (FASD) experience a range of biopsychosocial vulnerabilities that can increase the possibility of adverse life outcomes, including a heightened risk of suicidality. In this study, we explored the lived experiences of caregivers of children and youth with FASD and suicidality, including their perceptions of their child and youth's suicidal experiences. Between March and June 2021, six comprehensive, semi-structured interviews were conducted with five caregivers of children and youth with FASD (Mage = 14.5 years, range 11–22) who were currently experiencing suicidality or had a history of suicidality. Data were analyzed using interpretative phenomenological analysis and then developed into a composite vignette informed and organized by the social-ecological suicide prevention model (SESPM). The composite vignette revealed the narratives of families living with and caring for children and youth with FASD who experience suicidality in relation to the complex and intersectional individual, relational, community, and societal level contextual and protective factors. Findings from this study highlight the critical need for comprehensive FASD-informed suicide prevention and intervention approaches to promote the mental health and wellbeing of children and youth with FASD and their caregivers.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Caregivers' experiences and perceptions of suicidality among their children and youth with fetal alcohol spectrum disorder

et al. 2022

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“…A shift from a deficit-based to a strength-based management approach emphasizes the need to harness the abilities of individuals with FASD to improve their QOL and well-being. A review of 19 studies exploring the lived experience of people with FASD highlighted their strengths, including self-awareness, receptiveness to support, capacity for human connection, perseverance and hope for the future 271 . The lack of accessible, FASD-informed services perpetuates a deficit-based model.…”

Section: Quality Of Lifementioning

confidence: 99%

Fetal alcohol spectrum disorders

Popova

Charness

Burd

et al. 2023

Nat Rev Dis Primers

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Alcohol readily crosses the placenta and may disrupt fetal development. Harm from prenatal alcohol exposure (PAE) is determined by the dose, pattern, timing and duration of exposure, fetal and maternal genetics, maternal nutrition, concurrent substance use, and epigenetic responses. A safe dose of alcohol use during pregnancy has not been established. PAE can cause fetal alcohol spectrum disorders (FASD), which are characterized by neurodevelopmental impairment with or without facial dysmorphology, congenital anomalies and poor growth. FASD are a leading preventable cause of birth defects and developmental disability. The prevalence of FASD in 76 countries is >1% and is high in individuals living in out-of-home care or engaged in justice and mental health systems. The social and economic effects of FASD are profound, but the diagnosis is often missed or delayed and receives little public recognition. Future research should be informed Nature Reviews Disease Primers | (2023) 9:11 2 0123456789();: PrimerFASD occur in all socioeconomic and ethnic groups 15 and are complex, chronic conditions that affect health and family functioning 16 . Individuals with FASD usually require lifelong health care as well as social and vocational support. Some require remedial education and others interact with the justice system. Early diagnosis and a strength-based management approach will optimize health outcomes.FASD are the most common of the potentially preventable conditions associated with birth anomalies and neurodevelopmental problems 13 , and their global effects, including huge social and economic costs, are substantial 17 . For example, in Canada, the annual cost associated with FASD is an estimated ~CAD$ 1.8 billion (CAD$ 1.3 billion to CAD$ 2.3 billion) 17 , which is attributable in part to productivity loss (41%), correction services (29%) and health care (10%). In North America, the lifetime cost of supporting an individual with FASD is estimated at >CAD$ 1 million 18 . Addressing and preventing alcohol use in pregnancy is a public-health imperative.This Primer presents the epidemiology of FASD and the latest understanding of its pathophysiology as well as approaches to diagnosis, screening and prevention. The Primer also describes outcomes across the lifespan, management and quality of life (QOL) of people living with FASD, and highlights important areas for future research and clinical practice. Epidemiology Alcohol use during pregnancyNo safe level of PAE has been established 19 , and international guidelines advise against any amount or type of alcohol use during pregnancy [20][21][22][23] . Nevertheless, ~10% of pregnant women worldwide consume alcohol 24,25 . The highest prevalence of alcohol use during pregnancy is in the WHO European Region (25.2% 24 ; Fig. 1), consistent with the prevalence of heavy alcohol use, heavy episodic drinking and alcohol use disorders in this region 26 . 0123456789();: PrimerIn 40% of the 162 countries evaluated, >25% of women who consumed any alcohol during pregnancy drank at 'bing...

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“…5 Building on this important work, researchers have increasingly identified a need to give equal weighting to areas of strength and protective factors, both of which are c ri t i c a l c o m p o n e n t s o f i n t e rv e n t i o n p l a nn i n g a n d developing support systems. 7,8 Concurrent with this growing awareness of the importance of strengths has been increasing awareness of the necessity of identifying possible pathways and processes to facilitate goal setting for individuals with FASD. 6,7 In order to help support intervention approaches throughout the lifespan, the "Towards Healthy Outcomes" framework was developed.…”

Section: Introductionmentioning

confidence: 99%

Towards Healthy Outcomes for Individuals with FASD

Joly

Harding

Pei

2022

Journal of Fetal Alcohol Spectrum Disorder

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Background and objectiveIndividuals with Fetal Alcohol Spectrum Disorder (FASD) may experience a range of behavioral, cognitive, and physiological difficulties that can result from prenatal alcohol exposure. Intervention approaches for individuals with FASD are required to respond to evolving strengths and needs throughout their lifespan. Material and methodsIn response to these evolving unique needs, best practices were developed by integrating current research findings with the experiences of individuals with FASD and their caregivers. The “Towards Healthy Outcomes” approach has been developed to provide an evidence-informed framework to support intervention for individuals with FASD throughout their lifespan. ResultsThis framework was developed based on core philosophies that create opportunities for individualized intervention support, including development throughout the lifespan, impact of interacting systems, and a strengths-based approach. These underlying philosophies and core beliefs are actioned throughout the lifespan around the following 12 domains: (1) physical health; (2) attachment; (3) family cohesion; (4) social functioning; (5) mental health and regulation; (6) education; (7) identity development; (8) community engagement; (9) adaptive skills; (10) housing; (11) employment; and (12) parenting skills. To establish its potential use, each of these domains is considered broadly within the context of FASD field, including the new ideas put forward by the studies included in this issue. ConclusionThe “Towards Healthy Outcomes” framework is an intervention approach that facilitates proactive and evidence-informed approaches to foster the development of individuals with FASD. It provides developmental considerations that are specific to the 12 domains and reflect the whole person. Furthermore, the “Towards Healthy Outcomes” framework allows for the integration of research with the lived experiences of caregivers and individuals with FASD that bridges existing research gaps.

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Balancing the story of fetal alcohol spectrum disorder: A narrative review of the literature on strengths

Cited by 47 publications

References 70 publications

Caregivers' experiences and perceptions of suicidality among their children and youth with fetal alcohol spectrum disorder

Caregivers' experiences and perceptions of suicidality among their children and youth with fetal alcohol spectrum disorder

Fetal alcohol spectrum disorders

Towards Healthy Outcomes for Individuals with FASD

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