Fetal Alcohol Research Articles

Qualitative study of the lived experience of methylphenidate prescribed for children with a fetal alcohol spectrum disorder.

Fetal Alcohol Spectrum Disorders (FASD) refer to physical, cognitive, and behavioural symptoms in an individual whose mother consumed alcohol during pregnancy. It is the leading cause of non-genetic avoidable mental disability, with an estimated worldwide prevalence of 1%. Attention Deficit Hyperactivity Disorder (ADHD) diagnostic criteria are met for 50-80% of patients with FASD. Methylphenidate (MPH) is the first-line pharmacological treatment for ADHD. This study aims to explore the lived experience of children with FASD taking MPH and their caregivers to adapt prescribing modalities by considering different ways to administer the drugs. We hope to improve the therapeutic alliance between the children and their caregivers by gaining an insiders' view of the medication perception. Semi-structured interviews with children and their caregivers were conducted in this qualitative study. Data collection by purposive sampling continued until we reached theoretical sufficiency. Data were analysed using interpretative phenomenological analysis. We conducted 16 semi-structured interviews: 8 with the children aged 7-12, 5 boys and 3 girls and 8 with their caregivers. The analysis showed that inadequate palatability and capsule form experiences were the leading causes of children's non-adherence to the treatment. MPH appeared to be a valuable aid for caregivers even if they had concerns about its potential toxicity. However, it is necessary to identify caregivers' expectations concerning MPH to adapt the prescription in terms of choice of specialty and intake modalities. Regular support was required to reduce caregivers' fears of dependence, personality transformation and long-term adverse effects. Information on palatability should be given when prescribing MPH to children with ADHD as well as its possible side effects or toxicity. It highlights the need for further studies of the experience of palatability of drugs prescribed to children. When prescribing a treatment, children should be more involved in medical counselling and it is necessary to understand the child's perspectives to co-construct common representations for better therapeutical adherence.

An examination of executive functioning in adolescents with FASD in a self-regulation intervention.

Adolescents with Fetal Alcohol Spectrum Disorder (FASD) often have challenges with executive functioning (EF), which impacts their ability to self-regulate. In this study, 23 adolescents with FASD completed a self-regulation intervention. The intervention was a manualized Teen Adaptation of the Alert Program®. A nonrandomized waitlist control design was used, and participants completed pre- and post-testing using performance-based measures of EF, and rating scales of EF were completed by caregivers. Results were analyzed three ways; 1) intervention and waitlist control group comparison, 2) whole sample pre-and post- test comparison, and 3) using Reliable Change Indexes to examine individual-level clinically relevant changes. No significant intervention effects were found when comparing the intervention and waitlist control groups. A significant difference was found on a measure of verbal inhibition when total sample pre-and post-test scores were compared. Using Reliable Change Index analysis, 30% participants showed reliable change in the direction of improvement on direct measures of EF, and 57% demonstrated reliable change in the direction of improvement on rating scales. This research study underscores the importance of investigating both individual and group level changes when analyzing data, as well as using reliable change to understand clinically meaningful effects that may be otherwise masked. These findings highlight the potential of the SR intervention to positively impact EF in adolescents with FASD. This study contributes to the growing literature that demonstrates the potential of individuals with FASD to benefit from direct intervention.

Effects of prenatal alcohol exposure on the olfactory system development

Fetal Alcohol Spectrum Disorders (FASD), resulting from maternal alcohol consumption during pregnancy, are a prominent non-genetic cause of physical disabilities and brain damage in children. Alongside common symptoms like distinct facial features and neurocognitive deficits, sensory anomalies, including olfactory dysfunction, are frequently noted in FASD-afflicted children. However, the precise mechanisms underpinning the olfactory abnormalities induced by prenatal alcohol exposure (PAE) remain elusive. Utilizing rodents as a model organism with varying timing, duration, dosage, and administration routes of alcohol exposure, prior studies have documented impairments in olfactory system development caused by PAE. Many reported a reduction in the olfactory bulb (OB) volume accompanied by reduced OB neuron counts, suggesting the OB is a brain region vulnerable to PAE. In contrast, no significant olfactory system defects were observed in some studies, though subtle alterations might exist. These findings suggest that the timing, duration, and extent of fetal alcohol exposure can yield diverse effects on olfactory system development. To enhance comprehension of PAE-induced olfactory dysfunctions, this review summarizes key findings from previous research on the olfactory systems of offspring prenatally exposed to alcohol.

Reduction of APOE accounts for neurobehavioral deficits in fetal alcohol spectrum disorders.

A hallmark of fetal alcohol spectrum disorders (FASD) is neurobehavioral deficits that still do not have effective treatment. Here, we present that reduction of Apolipoprotein E (APOE) is critically involved in neurobehavioral deficits in FASD. We show that prenatal alcohol exposure (PAE) changes chromatin accessibility of Apoe locus, and causes reduction of APOE levels in both the brain and peripheral blood in postnatal mice. Of note, postnatal administration of an APOE receptor agonist (APOE-RA) mitigates motor learning deficits and anxiety in those mice. Several molecular and electrophysiological properties essential for learning, which are altered by PAE, are restored by APOE-RA. Our human genome-wide association study further reveals that the interaction of PAE and a single nucleotide polymorphism in the APOE enhancer which chromatin is closed by PAE in mice is associated with lower scores in the delayed matching-to-sample task in children. APOE in the plasma is also reduced in PAE children, and the reduced level is associated with their lower cognitive performance. These findings suggest that controlling the APOE level can serve as an effective treatment for neurobehavioral deficits in FASD.

Adaptive, Externalizing, and Internalizing Behavior of Children with Prenatal Alcohol Exposure: A Comparison of Three Parent-Report Questionnaires

ABSTRACT This study compared the Behavior Assessment System for Children-Third Edition (BASC-3) to the Child Behavior Checklist (CBCL) and the Vineland Adaptive Behavior Scales-Third Edition (VABS-3) in children with and without histories of prenatal alcohol exposure. Data were collected from Collaborative Initiative on Fetal Alcohol Spectrum Disorders Phase 4 sites. Caregivers rated their child’s behavior using three questionnaires: BASC-3, CBCL, and VABS-3. BASC-3 Adaptive Skills, Externalizing Problems, and Internalizing Problems scores were correlated with comparable scores from the CBCL (Externalizing and Internalizing Problems) and VABS-3 (Adaptive Skills) both within and across groups. Sensitivity, specificity, and positive and negative predictive values were calculated for the BASC-3. BASC-3 sensitivity rates were 78.1%, 80.5%, and 47.0% and specificity rates were 79.4%, 80.4%, and 81.5% for Adaptive Skills, Externalizing Problems, and Internalizing Problems, respectively. Positive predictive values were 87.1%, 88.0%, and 81.9% and negative predictive values were 67.0%, 69.8%, and 46.3% for Adaptive Skills, Externalizing Problems, and Internalizing Problems, respectively. Results replicated previous reports of behavioral and adaptive difficulties in children with prenatal alcohol exposure. These findings provide support for using the BASC-3 in this population.

Risk and Resilience Variants in the Retinoic Acid Metabolic and Developmental Pathways Associated with Risk of FASD Outcomes

Fetal Alcohol Spectrum Disorder (FASD) is a common neurodevelopmental disorder that affects an estimated 2–5% of North Americans. FASD is induced by prenatal alcohol exposure (PAE) during pregnancy and while there is a clear genetic contribution, few genetic factors are currently identified or understood. In this study, using a candidate gene approach, we performed a genetic variant analysis of retinoic acid (RA) metabolic and developmental signaling pathway genes on whole exome sequencing data of 23 FASD-diagnosed individuals. We found risk and resilience alleles in ADH and ALDH genes known to normally be involved in alcohol detoxification at the expense of RA production, causing RA deficiency, following PAE. Risk and resilience variants were also identified in RA-regulated developmental pathway genes, especially in SHH and WNT pathways. Notably, we also identified significant variants in the causative genes of rare neurodevelopmental disorders sharing comorbidities with FASD, including STRA6 (Matthew–Wood), SOX9 (Campomelic Dysplasia), FDG1 (Aarskog), and 22q11.2 deletion syndrome (TBX1). Although this is a small exploratory study, the findings support PAE-induced RA deficiency as a major etiology underlying FASD and suggest risk and resilience variants may be suitable biomarkers to determine the risk of FASD outcomes following PAE.

Development and psychometric evaluation of a questionnaire to measure university students’ knowledge on the effects of alcohol use during pregnancy

IntroductionAlcohol consumption during pregnancy can lead to fetal alcohol spectrum disorders. This study developed and validated a questionnaire to assess university students’ knowledge regarding the effects of alcohol during pregnancy.MethodsWe designed an instrument with true-false-I do not know statements. Initially, 45 true statements were formulated and subjected to content validation by 19 experts. Based on the Content Validity Index (CVI), 17 items were selected. The instrument, called the Fetal Alcohol Consequences Test (FACT), was first assessed by 31 university students for the level of understanding. Then, the questionnaire was administered to a national Brazilian sample of university students, and an Exploratory Factor Analysis (EFA) was conducted. Each correct FACT answer was worth 1 point, and the knowledge was categorized as high (total score ≥ 80%), moderate (score between 60 and 79%), and low (score ≤ 59%).ResultsWhen the questionnaire was being designed, the CVI values ranged from 0.779 to 1.0, and all statements were considered suitable by the target audience. For psychometric evaluation, 768 students from 24 Brazilian states participated. In the EFA, five statements were removed, revealing a tool with 12 items and two latent factors: “fetal alcohol spectrum disorders” and “conceptions and guidance on alcohol consumption during pregnancy.” The KMO index (0.76426) and Bartlett’s sphericity test (6362.6, df = 66, p < 0.00001) both supported the final EFA model. The goodness-of-fit indices for the factor structure were adequate: χ2 = 119.609, df = 43, p < 0.00001; RMSEA = 0.048; CFI = 0.977; TLI = 0.965. The mean total FACT score among participants was 7.71 ± 2.98, with a median of 8; 32.03% of the students had high (10–12 points), 24.09% moderate (8–9 points), and 43.88% low knowledge (<8 points). The questionnaire proved reliable, with a floor effect of 1.17%, a ceiling effect of 9.25%, and a Cronbach’s alpha index of 0.798.ConclusionThe FACT can be utilized in university students’ health education processes, contributing to greater knowledge and information dissemination about the effects of alcohol during pregnancy, in addition to the formulation of policies on the subject directed to this group of young adults.

FASD: The Living Experience of People with Fetal Alcohol Spectrum Disorder—Results of an Anonymous Survey

Fetal Alcohol Spectrum Disorder (FASD) is considered a lifelong disability that has been framed with neurobiological descriptions focused on the brain. These are important features but fail to tell the story of living with FASD. By surveying those with FASD, this work expanded upon prior survey work which illustrated a multitude of early-onset physiological issues occurring at rates much higher than is typical of the general population. The current project, again using an anonymous survey methodology, sought to open up other direct experiences to better understand the complexity of living with FASD. An anonymous online survey was used to gather data on adversity in childhood, schooling, employment, housing and finances, and involvement with the criminal justice system, as well as relationships and parenting. Results indicate high levels of adversity throughout the life span; vulnerability to manipulation, which is connected to involvement in the criminal justice system; struggles with housing; economic instability; and struggles maintaining employment, as well as difficulties with social and familial relationships. Systemic stigma was also identified. Suggestions are offered to inform others on how support can be enhanced and targeted with a goal of improving quality of life, as well as dealing with self-imposed stigma. The survey was developed by adults living with FASD who have served as a long-standing advocacy and educational group influencing policy and practice in the field.

Innovating Services for Justice-Involved Individuals with Fetal Alcohol Spectrum Disorder: The In Reach Project

ABSTRACT Fetal Alcohol Spectrum Disorder (FASD) is a term describing the range of neurocognitive, physical, behavioral, and learning difficulties resulting from prenatal alcohol exposure. Individuals with FASD are at an increased risk, relative to those without FASD, for justice system involvement. To address this concern, the Willow Winds Support Network developed and implemented the In Reach project to provide FASD-specific services and supports to residents and staff of justice facilities in Alberta, Canada. Semi-structured interviews revealed facilitators of the project’s success, emerging outcomes, and the perceived need for FASD-specific services in justice facilities. Research, practice, and policy implications are discussed.

In Vivo Administration of Phosphatidic Acid, a Direct Alcohol Target Rescues Fetal Growth Restriction and Maternal Uterine Artery Dysfunction in Rat FASD Model

Fetal growth restriction is a hallmark of Fetal Alcohol Syndrome (FAS) and is accompanied by maternal uterine circulatory maladaptation. FAS is the most severe form of Fetal Alcohol Spectrum Disorder (FASD), a term for the range of conditions that can develop in a fetus when their pregnant mother consumes alcohol. Alcohol exerts specific direct effects on lipids that control fundamental developmental processes. We previously demonstrated that direct in vitro application of phosphatidic acid (PA, the simplest phospholipid and a direct target of alcohol exposure) to excised uterine arteries from alcohol-exposed rats improved vascular function, but it is unknown if PA can rescue end organ phenotypes in our FASD animal model. Pregnant Sprague-Dawley rats (n = 40 total dams) were gavaged daily from gestational day (GD) 5 to GD 19 with alcohol or maltose dextrin, with and without PA supplementation, for a total of four unique groups. To translate and assess the beneficial effects of PA, we hypothesized that in vivo administration of PA concomitant with chronic binge alcohol would reverse uterine artery dysfunction and fetal growth deficits in our FASD model. Mean fetal weights and placental efficiency were significantly lower in the binge alcohol group compared with those in the control (p < 0.05). However, these differences between the alcohol and the control groups were completely abolished by auxiliary in vivo PA administration with alcohol, indicating a reversal of the classic FAS growth restriction phenotype. Acetylcholine (ACh)-induced uterine artery relaxation was significantly impaired in the uterine arteries of chronic in vivo binge alcohol-administered rats compared to the controls (p < 0.05). Supplementation of PA in vivo throughout pregnancy reversed the alcohol-induced vasodilatory deficit; no differences were detected following in vivo PA administration between the pair-fed control and PA alcohol groups. Maximal ACh-induced vasodilation was significantly lower in the alcohol group compared to all the other treatments, including control, control PA, and alcohol PA groups (p < 0.05). When analyzing excitatory vasodilatory p1177-eNOS, alcohol-induced downregulation of p1177-eNOS was completely reversed following in vivo PA supplementation. In summary, these novel data utilize a specific alcohol target pathway (PA) to demonstrate a lipid-based preventive strategy and provide critical insights important for the development of translatable interventions.

Neonate Simulators: Creatively Engaging Social Work Students in Understanding Risks of Alcohol Use during Pregnancy

Abstract Use of simulation-based education (SBE) in social work is growing. However, there is a lack of substance use training, for both post-qualified social workers and undergraduate social work students. This study addressed a gap in undergraduate substance use education around prenatal alcohol exposure (PAE) and its impact on foetal development. A mixed methods approach was used with undergraduate social work students across two universities in the Southwest of the UK. Both groups received a taught session on foetal alcohol syndrome (FAS), completed pre- and post-taught session questionnaires assessing FAS knowledge, and had the opportunity to interact with the FAS neonate simulator. Creative activities around interaction with the FAS simulator enabled feedback on thoughts, feelings and practice implications. Findings revealed increased pre- to post-FAS knowledge and enhanced understanding of the long-term impacts of gestational alcohol use for the developing child. Social work students felt more aware of the impact of alcohol use during pregnancy and were more confident to address these issues through future practice. The use of FAS neonate simulators as a pedagogic tool is beneficial to help elucidate student knowledge on alcohol use during pregnancy and to increase confidence working with people who are pregnant who may be using alcohol or substances.

Machine learning algorithms to the early diagnosis of fetal alcohol spectrum disorders

IntroductionFetal alcohol spectrum disorders include a variety of physical and neurocognitive disorders caused by prenatal alcohol exposure. Although their overall prevalence is around 0.77%, FASD remains underdiagnosed and little known, partly due to the complexity of their diagnosis, which shares some symptoms with other pathologies such as autism spectrum, depression or hyperactivity disorders.MethodsThis study included 73 control and 158 patients diagnosed with FASD. Variables selected were based on IOM classification from 2016, including sociodemographic, clinical, and psychological characteristics. Statistical analysis included Kruskal-Wallis test for quantitative factors, Chi-square test for qualitative variables, and Machine Learning (ML) algorithms for predictions.ResultsThis study explores the application ML in diagnosing FASD and its subtypes: Fetal Alcohol Syndrome (FAS), partial FAS (pFAS), and Alcohol-Related Neurodevelopmental Disorder (ARND). ML constructed a profile for FASD based on socio-demographic, clinical, and psychological data from children with FASD compared to a control group. Random Forest (RF) model was the most efficient for predicting FASD, achieving the highest metrics in accuracy (0.92), precision (0.96), sensitivity (0.92), F1 Score (0.94), specificity (0.92), and AUC (0.92). For FAS, XGBoost model obtained the highest accuracy (0.94), precision (0.91), sensitivity (0.91), F1 Score (0.91), specificity (0.96), and AUC (0.93). In the case of pFAS, RF model showed its effectiveness, with high levels of accuracy (0.90), precision (0.86), sensitivity (0.96), F1 Score (0.91), specificity (0.83), and AUC (0.90). For ARND, RF model obtained the best levels of accuracy (0.87), precision (0.76), sensitivity (0.93), F1 Score (0.84), specificity (0.83), and AUC (0.88). Our study identified key variables for efficient FASD screening, including traditional clinical characteristics like maternal alcohol consumption, lip-philtrum, microcephaly, height and weight impairment, as well as neuropsychological variables such as the Working Memory Index (WMI), aggressive behavior, IQ, somatic complaints, and depressive problems.DiscussionOur findings emphasize the importance of ML analyses for early diagnoses of FASD, allowing a better understanding of FASD subtypes to potentially improve clinical practice and avoid misdiagnosis.

Influence of childhood trauma and traumatic stress on a woman's risk of having a child with a fetal alcohol spectrum disorder.

Maternal risk factors for having a child diagnosed on the fetal alcohol spectrum disorders (FASD) continuum are complex and include not only the quantity, frequency, and timing of alcohol use but also a woman's physical stature, socio-economic status, and pregnancy-related factors. Exposure to trauma may predispose women to a range of physiological and mental disorders. A woman's mental and physical health may in turn influence her probability of having a child with FASD. This study investigated the role of maternal childhood trauma and lifetime traumatic stress on prenatal alcohol consumption and on the risk of having a child with FASD. A nested, case-control study was conducted for maternal risk assessment. Study participants were mothers of first-grade learners from five rural communities in the Western Cape Province of South Africa who were assessed for FASD. Face-to-face surveys were conducted, which included mental health and trauma assessment questionnaires. In logistic regression analyses, higher maternal childhood trauma scores were associated with an increased likelihood of having a child diagnosed with FASD, although the increase in risk was modest (OR = 1.014, p = 0.015). In addition, structural equation modeling investigated relationships between maternal drinking, childhood trauma, traumatic stress, and a child's FASD diagnosis. Traumatic stress and drinking during pregnancy, but not lifetime alcohol use, were associated with maternal childhood trauma. Lifetime alcohol use influenced drinking during pregnancy, which in turn was significantly associated with having a child diagnosed on the continuum of FASD. No direct influence of maternal childhood trauma on FASD diagnosis could be demonstrated. However, maternal trauma may indirectly contribute to the risk of having a child diagnosed with FASD.

The histamine H3 receptor inverse agonist SAR-152954 reverses deficits in long-term potentiation associated with moderate prenatal alcohol exposure

Prenatal alcohol exposure can have persistent effects on learning, memory, and synaptic plasticity. Previous work from our group demonstrated deficits in long-term potentiation (LTP) of excitatory synapses on dentate gyrus granule cells in adult offspring of rat dams that consumed moderate levels of alcohol during pregnancy. At present, there are no pharmacotherapeutic agents approved for these deficits. Prior work established that systemic administration of the histaminergic H3R inverse agonist ABT-239 reversed deficits in LTP observed following moderate PAE. The present study examines the effect of a second H3R inverse agonist, SAR-152954, on LTP deficits following moderate PAE. We demonstrate that systemic administration of 1 mg/kg of SAR-152954 reverses deficits in potentiation of field excitatory post-synaptic potentials (fEPSPs) in adult male rats exposed to moderate PAE. Time-frequency analyses of evoked responses revealed PAE-related reductions in power during the fEPSP, and increased power during later components of evoked responses which are associated with feedback circuitry that are typically not assessed with traditional amplitude-based measures. Both effects were reversed by SAR-152954. These findings provide further evidence that H3R inverse agonism is a potential therapeutic strategy to address deficits in synaptic plasticity associated with PAE.

Growth Hormone Therapy in a Child with Fetal Alcohol Syndrome: Personal Experience with Literature Review

Introduction: Fetal alcohol syndrome (FAS) is associated with a positive maternal history of drinking during pregnancy and the presence of characteristic dysmorphic features due to alcohol teratogenic effect. No evidence is yet available regarding the use of growth hormone (GH) for children with FAS for whom GH deficiency has not been confirmed. Case Presentation: We have highlighted an improvement in auxological parameters of a child with FAS and normal GH stimulation tests, using a GH dosage similar to that used in idiopathic GH deficit, without side effects. Conclusion: GH therapy in children with FAS may lead to an improvement in growth rate and an increase in final height, although, this condition is not included in the specific recommendations for use of GH. Prolonged follow-up and prospective studies are needed to evaluate long-term efficacy and monitor any possible onset of side effects.

Lower resting state functional connectivity partially mediates adverse effects of prenatal alcohol exposure on arithmetic performance in children.

Fetal alcohol spectrum disorders (FASD) include a range of neurocognitive and behavioral impairments resulting from prenatal alcohol exposure (PAE). Among the PAE-related cognitive deficits, number processing is particularly affected. This study examines alterations in number processing networks and whether changes in functional connectivity mediate the adverse effects of PAE on arithmetic performance. Magnetic resonance imaging (MRI) was acquired in 57 children (mean (SD) age = 11.3 (+0.9) yr), 38 with FASD (19 fetal alcohol syndrome (FAS) or partial FAS (PFAS), 19 heavily exposed (HE)) and 19 controls. Whole-brain correlation analyses were performed from five seeds located in regions involved in number processing. Children with FAS/PFAS showed dose-dependent reductions in resting state functional connectivity between the seed in the right (R) posterior superior parietal lobule and a cluster in the left (L) inferior frontal gyrus, and between a seed in the R horizontal intraparietal sulcus and clusters in the R precentral gyrus and L cerebellar lobule VI. HE children showed lower resting state functional connectivity in a subset of these regions. Lower functional connectivity in the two fronto-parietal connections partially mediated the adverse effects of PAE on arithmetic performance. This study demonstrates PAE-related functional connectivity impairments in functional networks involved in number processing. The weaker connectivity between the R posterior superior parietal lobule and the L inferior frontal gyrus suggests that impaired verbal processing and visuospatial working memory may play a role in number processing deficits, while weaker connectivity between the R intraparietal sulcus and the R precentral gyrus points to poorer finger-based numerical representation, which has been linked to arithmetic computational skills.

ULTRASTRUCTURAL FEATURES OF CARDIOMYOCYTE CONTRACTILE APPARATUS IN RAT OFFSPRING HEARTS FOLLOWING MATERNAL CHRONIC ALCOHOL INTOXICATION

Background. The mechanisms underlying the development of the heart contractile apparatus and the distribution of myofibrils in cardiomyocytes following intrauterine ethanol intoxication continue to be a topic of significant debate. The aim of this paper is to determine the dynamics of postnatal changes in the ultrastructure of ventricular contractile cardiomyocytes in the rat heart after chronic alcoholization of the maternal organism. Methods. The study focused on the hearts of rat offspring from birth to adulthood. Transmission electron microscopy was utilized to examine the ultrastructure of cardiomyocytes in various zones of the ventricular myocardium. Results. It has been observed that prenatal alcohol exposure induces cardiomyocyte heteromorphism, characterized by varying degrees of damage throughout postnatal ontogenesis in rat offspring. Specifically, cells exhibiting critical signs of destruction in the myocardium of intramural and subepicardial zones of both ventricles aggregate into clusters surrounded by morphologically intact cardiomyocytes, while irreversibly damaged cells with subendocardial localization appear isolated. Following birth, there is a progressive accumulation of mitochondria exhibiting signs of limited functional activity. These polymorphic organelles, featuring a matrix of moderate or low electron density with sporadically developed cristae, primarily concentrate in paranuclear regions and are dispersed along the interstices of myofibril dissociation. Conclusion. Maternal chronic alcohol intoxication results in enduring harm to the contractile apparatus of ventricular cardiomyocytes in rat offspring. This damage manifests as sarcomere structure disorganization, myofibril fragmentation and misalignment, notable suppression of sarcomerogenesis, and reduced myofibril content, all closely linked to mitochondrial alterations.

Current and ideal living arrangements and supports for Canadian adults with fetal alcohol spectrum disorder: Part II-Perspectives from caregivers.

Caregivers supporting adults with fetal alcohol spectrum disorder (FASD) report concerns regarding living arrangements and services for their adult children with FASD. Best practices for living support for adults with FASD are under-researched, and few studies have explored the experiences of caregivers whose children are adults. This study examined the perspectives of caregivers who support adults (18+) with FASD regarding: (1) current ways adults with FASD are supported with daily life activities; and (2) ideal future living arrangements and supports. This article presents findings from the perspective of caregivers who support adults with FASD, as part of a broader project involving both adults with FASD and caregivers. Semi-structured interviews were conducted with 11 Canadian caregivers who live at home with an adult with FASD (aged 18+). Responses were examined using framework analysis, a structured approach to analyzing qualitative data. Caregivers described their experiences and perspectives regarding: (1) current ways adults with FASD are supported in their daily activities; (2) strategies for successful support; (3) ideal future living arrangements and supports; and (4) concerns for the future. Notably, almost every participant raised pressing concerns regarding the future living arrangements for the person they support once they are no longer able to provide care. This study explores caregivers' perspectives regarding living support needed by adults with FASD, which can inform support programs and housing services. Findings demonstrate an urgent need for policy change directed toward developing available, affordable, and appropriate housing for adults with FASD.

Current and ideal living arrangements and supports for Canadian adults with fetal alcohol spectrum disorder (FASD)-Part I: Perspectives from adults with FASD.

Adults with fetal alcohol spectrum disorder (FASD) can thrive with lifelong support in daily living activities. Previous research examining living support for adults with FASD has heavily relied on caregiver reports rather than lived experiences, which can undermine opportunities for self-determination. In this study, we examined the perspectives of adults with FASD to better understand: (1) the ways in which they are supported with daily life activities; and (2) their ideal future living arrangements and supports. This article presents findings from the perspective of adults with FASD as part of a broader project involving both adults with FASD and the caregivers who support them. Interviews were conducted with four Canadian adults with FASD who live in housing with supportive services and seven adults with FASD who live at home with the support of caregivers. Framework analyses, a structured approach to analyzing qualitative data, were used to examine participants' perspectives. In addition to providing support for previous findings, participants provided novel information regarding: (1) their daily living supports; (2) positive and negative aspects of their arrangements; and (3) ideal living environments and supports. This study offers insight into participants' perspectives regarding their living support, which is critical to inform housing and aid in self-determination. Areas of support outlined by participants can be used to begin conversations regarding the support required in housing arrangements for adults with FASD.

Advancing social work curriculum to challenge FASD-related stigma and promote strengths-based family engagement

ABSTRACT The need for professionals to become educated in fetal alcohol spectrum disorder (FASD) has emerged as a critical topic in child and family settings. FASD is sometimes described as being entirely preventable implying blame toward mothers and negative attitudes toward people with FASD. Without preservice education to address stigma associated with FASD, social workers are at risk of exacerbating deficit-based models of FASD care. Guided by an Australian study with health professionals who have skills in FASD assessment and care, this paper advances an agenda for social work curriculum capable of challenging FASD-related stigma to promote strengths-based family engagement.