Experiences of Children with Fetal Alcohol Spectrum Disorder and Their Families: A Critical Review.

Evidence suggests that children with fetal alcohol spectrum disorder (FASD) experience challenges across many areas of their daily lives and often require interprofessional supports. Recent studies have emphasized the need for an integrated system of care for children with FASD, incorporating medical, allied health, and education services, to facilitate open communication and support for the complex needs that many children experience. To develop such a system of care, it is important to first understand the impact of FASD on children's functioning during daily activities in different environmental contexts. A critical review of existing research was conducted using a critical interpretive synthesis approach. Results revealed that while many studies discussed impacts at the body functions and structures level of children with FASD, they often did not consider the activity, participation, and environmental factors also contributing to the daily functioning of this population. Several studies discussed caregiver experiences and challenges raising a child with FASD; however, no studies investigated the lived experiences relating to impacts across activities and environments from children's perspectives. In addition, the focus on deficits overshadowed investigation into the strengths of children with FASD, leaving a gap in the picture of their daily lives. Further research is required to determine the strengths that children with FASD demonstrate and the challenges impacting their daily functioning within different environmental contexts. Insights gleaned from such research would support intervention practices to become more holistic and interprofessional.

The best possible start: A qualitative study on the experiences of parents of young children with or at risk for fetal alcohol spectrum disorders.

BACKGROUND: The developmental outcomes and life course trajectories of young children with or at-risk for fetal alcohol spectrum disorders (FASD) can be optimized when individual and family needs are identified early and met with family-centered early intervention (EI) services. However, little is known about access to and quality of EI services with this high-needs population. METHOD: Twenty-five biological or adoptive parents of children with or at high risk for FASD, living in the greater area of Seattle, Washington participated in this qualitative study. Three focus groups were conducted using a semi-structured interview guide. Participants described their experience with EI, as well as other supports and challenges faced in their child's first three years of life. Interviews were audio recorded, transcribed verbatim and coded using phenomenological methods. Themes that were consistent across participant groups emerged from the data, as well as themes that showed differences among participant experiences. RESULTS: Common EI supports and needs between biological and adoptive parent groups were identified. In addition, perspectives and needs unique to each parent group were revealed. Themes were identified and organized into three categories: (1) child needs; (2) parent needs and priorities; and (3) EI capacity. When parents talked about their child's cognitive, physical, communication or adaptive development, they all discussed how EI was meeting those needs. In contrast, when parents expressed concern for their child's social-emotional development, a description of how EI was supporting these needs was missing from the conversation. Parents appreciated when EI providers were truthful, provided anticipatory guidance, and connected them with supports for their own social-emotional well-being. Yet there were unmet needs for respite care, and parents expressed that support for basic needs related to child or family survival was not consistently recognized as a top priority for families. This high-risk group of young children and their parents also encountered a multitude of transitions in their child's early years and later. Parents wanted more support navigating these transitions as they entered or moved through different systems of care. CONCLUSIONS: Parents appreciated and endorsed the importance of EI with its provision of individualized, family-centered supports and resources. Examination of the gaps and unmet needs that are common and distinct underscore the importance of an FASD-informed approach to EI. Study findings provide insight into areas for which EI enhancements could be developed in order to tailor supports for the complex needs of this diverse population of children and parents.

Two case reports of fetal alcohol syndrome: broadening into the spectrum of cardiac disease to personalize and to improve clinical assessment.

BACKGROUND: Fetal alcohol spectrum disorder (FASD) refers to a broad spectrum of disabilities, in infants and children, resulting from moderate to excessive prenatal alcohol exposure. Significant associations with alcohol exposure were already reported with congenital structural heart defects: i.e. ventricular septal defects, atrial septal defects, conotruncal defects. CASES PRESENTATION: We describe two cases of children with FASD, both admitted to the Center for Rare Diseases and Birth Defects of Policlinico Universitario Agostino Gemelli, in whom asymptomatic cardiac rhythm alterations were detected in absence of structural cardiovascular system anomalies or cardiac channelopathies. CONCLUSIONS: No other reports about cardiac rhythm anomalies in individuals affected by FASD are actually available from the literature. We would like to make an alert for clinician, given the possibility of finding anomalies of heart conduction and rhythm in children affected by FASD even without structural congenital heart disease.

Caregiver and family quality of life for children with fetal alcohol spectrum disorder.

BACKGROUND: Fetal alcohol spectrum disorder (FASD) is a common neurodevelopmental condition. Given that individuals with FASD can experience lifelong challenges, one field of research that could be applicable is the paediatric chronic health literature. AIMS: The aim of the current study was to investigate the utility of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module, designed to measure the impact of paediatric chronic health conditions on caregivers and families. METHODS AND PROCEDURES: 109 caregivers of children with FASD completed an online survey that assessed a range of areas including, caregiver and family quality of life, caregiver mental health and child behaviour. OUTCOMES AND RESULTS: Overall, caregivers reported the areas most impacted on the PedsQL module were Family Daily Activities and Worry. Caregiver's country of residence, mental health, child gender, and level of child behaviour problems were found to be predictors of caregiver and family quality of life. CONCLUSIONS AND IMPLICATIONS: The results demonstrate that there are multidimensional challenges for caregivers and families. These findings have important implications for policy and practice regarding the provision of supports and services for children with FASD and their families.

FAST Club: The Impact of a Physical Activity Intervention on Executive Function in Children With Fetal Alcohol Spectrum Disorder.

Physical activity (PA) has been demonstrated to have positive effects on cognitive function, particularly executive function (EF) skills. Animal models suggest PA may be effective in ameliorating some of the neuropsychological effects of fetal alcohol spectrum disorder (FASD), but this approach has not been extended to humans. The purpose of this study was to develop a PA program, FAST Club, for children with FASD and to evaluate its effect on a measure of EF. Using a wait-list control design, 30 children age 7-14 yr participated in FAST Club for 2 × 1.5-hr sessions/week for 8 weeks. EF was assessed using the Children's Color Trails Test. Significant improvements in T scores on the Children's Color Trails Test were seen immediately postprogram, and this improvement was sustained at 3 months postprogram. These findings provide evidence to support the use of PA as a means to improve EF in children with FASD.

Mathematics intervention for children with fetal alcohol spectrum disorder: A replication and extension of the math interactive learning experience (MILE) program.

BACKGROUND: Individuals with fetal alcohol spectrum disorders (FASD) experience deficits in behavior, cognition, and academic functioning resulting from prenatal alcohol exposure (PAE). Although receiving intervention for developmental disabilities is a strong protective factor against negative outcomes in FASD, intervention research in this population is in its infancy. AIMS: The purpose of this study was to replicate and extend a mathematics intervention, the Math Interactive Learning Experience (MILE) program, which was developed in the USA specifically for children with FASD. METHODS: Twenty-eight Canadian children aged 4-10 years with confirmed PAE or an FASD diagnosis were assigned to either the MILE intervention or a contrast intervention. RESULTS: Following a relatively brief, individualized, one-on-one intervention, children in the MILE group demonstrated significantly greater changes in math achievement compared to the contrast group. Significant changes in other cognitive functions were not observed. Older age, lower IQ, and confirmed PAE but no FASD diagnosis were associated with greater math achievement change in the MILE group. CONCLUSIONS: The replication and extension of the math intervention appears to have significant, positive impact on mathematics achievement scores of children with PAE and FASD.

Study protocol for a self-controlled cluster randomised trial of the Alert Program to improve self-regulation and executive function in Australian Aboriginal children with fetal alcohol spectrum disorder.

INTRODUCTION: While research highlights the benefits of early diagnosis and intervention for children with fetal alcohol spectrum disorders (FASD), there are limited data documenting effective interventions for Australian children living in remote communities. METHODS AND ANALYSIS: This self-controlled cluster randomised trial is evaluating the effectiveness of an 8-week Alert Program school curriculum for improving self-regulation and executive function in children living in remote Australian Aboriginal communities. Children in grades 1-6 attending any of the eight participating schools across the Fitzroy Valley in remote North-West Australia (N ≈ 363) were invited to participate. Each school was assigned to one of four clusters with clusters randomly assigned to receive the intervention at one of four time points. Clusters two, three and four had extended control conditions where students received regular schooling before later receiving the intervention. Trained classroom teachers delivered the Alert Program to students in discrete, weekly, 1-hour lessons. Student outcomes were assessed at three time points. For the intervention condition, data collection occurred 2 weeks immediately before and after the intervention, with a follow-up 8 weeks later. For control conditions in clusters two to four, the control data collection matched that of the data collection for the intervention condition in the preceding cluster. The primary outcome is change in self-regulation. FASD diagnoses will be determined via medical record review after the completion of data collection. The results will be analysed using generalised linear mixed modelling and reported in accordance with Consolidated Standards of Reporting Trials (CONSORT) guidelines. ETHICS AND DISSEMINATION: Ethical approval was obtained from the University of Western Australia (WA) (RA/4/1/7234), WA Aboriginal Health Ethics Committee (601) and WA Country Health Service (2015:04). The Kimberley Aboriginal Health Planning Forum Research Sub-Committee and WA Department of Education also provided approval. The results will be disseminated through peer-reviewed journals, conference presentations, the media and at forums. TRIAL REGISTRATION NUMBER: ACTRN12615000733572; Pre-results.

Investigating a theatre-based intervention for Indigenous youth with fetal alcohol spectrum disorder: Exploration d'une intervention basée sur le théâtre auprès de jeunes Autochtones atteints du syndrome d'alcoolisme fœtal.

BACKGROUND: Theatre-based interventions use artistic media to facilitate social and emotional awareness and have therapeutic benefits for persons with developmental disabilities and mental health problems. The role of these interventions with Indigenous youth who have emotional, behavioural, and cognitive sequelae related to fetal alcohol spectrum disorder (FASD) has not been explored. PURPOSE: The purpose of this study was to explore the experiences and acceptability of a theatre-based approach for facilitating social communication and engagement in youth with FASD. METHOD: Participants were three Indigenous youth with FASD. A qualitative exploration of the experiences and acceptability of the intervention was conducted via focus groups held 2 weeks post-program participation with the participants, their caregivers, and program facilitators. The transcripts were analyzed using an inductive thematic approach. FINDINGS: Our results identified perceived postintervention improvements in participants' development of self-esteem, social skills, and emotional awareness. IMPLICATIONS: A theatre-based arts intervention has the potential to support improvements in social skills for youth with FASD.

GoFAR: improving attention, behavior and adaptive functioning in children with fetal alcohol spectrum disorders: Brief report.

OBJECTIVE: This brief report describes the GoFAR intervention designed to improve attention, behavior, and adaptive functioning in children with FASD, ages 5 to 10 years. METHODS: Thirty children were randomized to one of three conditions: GoFAR; FACELAND, and CONTROL; 25 completed the interventions. Over 10 sessions children and caregivers learned a metacognitive strategy (FAR) designed to improve cognitive control of behavior and adaptive functioning and practiced it during behavior analog therapy. Attention, behavior problems, and adaptive skills were measured pre- and post-intervention. RESULTS: From pre- to post-testing the GoFAR intervention group improved on the Test of Variables of Attention (TOVA). Both intervention groups improved in Daily Living Skills. CONCLUSION: This pilot study demonstrated that children with FASD and their caregivers benefit from a focused intervention designed to improve effortful control of behavior. The study suggests the need for a larger clinical trial to evaluate the intervention's effectiveness.

Wheel Running and Environmental Complexity as a Therapeutic Intervention in an Animal Model of FASD.

Aerobic exercise (e.g., wheel running (WR) extensively used in animal research) positively impacts many measures of neuroplastic potential in the brain, such as rates of adult neurogenesis, angiogenesis, and expression of neurotrophic factors in rodents. This intervention has also been shown to mitigate behavioral and neuroanatomical aspects of the negative impacts of teratogens (i.e., developmental exposure to alcohol) and age-related neurodegeneration in rodents. Environmental complexity (EC) has been shown to produce numerous neuroplastic benefits in cortical and subcortical structures and can be coupled with wheel running to increase the proliferation and survival of new cells in the adult hippocampus. The combination of these two interventions provides a robust "superintervention" (WR-EC) that can be implemented in a range of rodent models of neurological disorders. We will discuss the implementation of WR/EC and its constituent interventions for use as a more powerful therapeutic intervention in rats using the animal model of prenatal exposure to alcohol in humans. We will also discuss which elements of the procedures are absolutely necessary for the interventions and which ones may be altered depending on the experimenter's question or facilities.

Intervention recommendations and subsequent access to services following clinical assessment for fetal alcohol spectrum disorders.

BACKGROUND: Children with fetal alcohol spectrum disorders (FASD) and prenatal alcohol exposure (PAE) experience multiple difficulties requiring various interventions. Researchers have called for investigation into service use with respect to clinically recommended interventions. AIMS: To examine intervention recommendations for children with FASD/PAE and subsequent access to these recommended interventions. METHODS AND PROCEDURES: Intervention recommendations following FASD assessment were examined for children (1-17 years). Recommendations were compared according to diagnostic status and demographic and environmental variables. Subsequent access to several interventions was examined for 45 participants. OUTCOMES AND RESULTS: A variety of recommendations were given. Children with FASD received more recommendations overall and received more education, anticipatory guidance, family support, and safety recommendations than undiagnosed children with PAE. Undiagnosed children received more mental health and reassessment recommendations. Older children received fewer family support and developmental therapy recommendations but more mental health recommendations than younger age groups. Many families accessed modified school programming, developmental therapy, psychiatry, child counseling, and parent support as recommended. CONCLUSIONS AND IMPLICATIONS: Children with FASD and PAE have extensive needs and should receive individualized recommendations. An assessment is valuable even without an FASD diagnosis. Areas of high/low service access may provide insight into accessibility and perceived importance of interventions. WHAT THIS PAPER ADDS: This study responds to important research questions regarding the intervention needs of individuals with FASD. It is novel in its exploration of intervention recommendations given to children prenatally exposed to alcohol without an FASD diagnosis (rather than only children with FASD) and in its examination of post-assessment service use patterns specifically in relation to clinical recommendations.

The development of a culturally appropriate school based intervention for Australian Aboriginal children living in remote communities: A formative evaluation of the Alert Program® intervention.

BACKGROUND/AIM: Although previous research has demonstrated the benefits of targeting self-regulation in non-Aboriginal children, it is unclear whether such programs would be effective for Aboriginal children attending school in remote communities. Some of these children have been diagnosed with a fetal alcohol spectrum disorder (FASD) impairing their ability to self-regulate. The aim of this article is to describe a three phase formative process to develop and pilot a curriculum version of the Alert Program® , a promising intervention for improving self-regulation that could be used in remote community schools. This modified version of the program will be subsequently tested in a cluster randomised controlled trial. METHODS: A mixed methods approach was used. RESULTS: Modifications to the Alert Program® , its delivery and evaluation were made after community and stakeholder consultation facilitated by a senior Aboriginal community researcher. Changes to lesson plans and program resources were made to reflect the remote community context, classroom environment and the challenging behaviours of children. Standardised study outcome measures were modified by removing several questions that had little relevance to the lives of children in remote communities. Program training for school staff was reduced in length to reduce staff burden. CONCLUSIONS: This study identified aspects of the Alert Program® training, delivery and measures for evaluation that need modification before their use in assessing the efficacy of the Alert Program® in remote Aboriginal community primary schools.

Interventions to improve gross motor performance in children with neurodevelopmental disorders: a meta-analysis.

BACKGROUND: Gross motor skills are fundamental to childhood development. The effectiveness of current physical therapy options for children with mild to moderate gross motor disorders is unknown. The aim of this study was to systematically review the literature to investigate the effectiveness of conservative interventions to improve gross motor performance in children with a range of neurodevelopmental disorders. METHODS: A systematic review with meta-analysis was conducted. MEDLINE, EMBASE, AMED, CINAHL, PsycINFO, PEDro, Cochrane Collaboration, Google Scholar databases and clinical trial registries were searched. Published randomised controlled trials including children 3 to ≤18 years with (i) Developmental Coordination Disorder (DCD) or Cerebral Palsy (CP) (Gross Motor Function Classification System Level 1) or Developmental Delay or Minimal Acquired Brain Injury or Prematurity (<30 weeks gestational age) or Fetal Alcohol Spectrum Disorders; and (ii) receiving non-pharmacological or non-surgical interventions from a health professional and (iii) gross motor outcomes obtained using a standardised assessment tool. Meta-analysis was performed to determine the pooled effect of intervention on gross motor function. Methodological quality and strength of meta-analysis recommendations were evaluated using PEDro and the GRADE approach respectively. RESULTS: Of 2513 papers, 9 met inclusion criteria including children with CP (n = 2) or DCD (n = 7) receiving 11 different interventions. Only two of 9 trials showed an effect for treatment. Using the least conservative trial outcomes a large beneficial effect of intervention was shown (SMD:-0.8; 95% CI:-1.1 to -0.5) with "very low quality" GRADE ratings. Using the most conservative trial outcomes there is no treatment effect (SMD:-0.1; 95% CI:-0.3 to 0.2) with "low quality" GRADE ratings. Study limitations included the small number and poor quality of the available trials. CONCLUSION: Although we found that some interventions with a task-orientated framework can improve gross motor outcomes in children with DCD or CP, these findings are limited by the very low quality of the available evidence. High quality intervention trials are urgently needed.

Virtual Sensorimotor Training for Balance: Pilot Study Results for Children With Fetal Alcohol Spectrum Disorders.

PURPOSE: To examine the effects of Sensorimotor Training to Affect Balance, Engagement, and Learning (STABEL), a virtual reality system to train sensory adaptation for balance control, for children with fetal alcohol spectrum disorders (FASDs). METHODS: Twenty-three children with FASDs received STABEL training in a university laboratory, or home, or were controls. The Movement Assessment Battery for Children-2nd edition (MABC-2) and Pediatric Clinical Test of Sensory Interaction for Balance-2 (P-CTSIB-2) were analyzed by group (lab, home, and control), session (pre-STABEL, 1 week post-STABEL, and 1 month post-STABEL), and group-by-session interaction. RESULTS: Significant effects were group and session for MABC-2 Balance and interaction for MABC-2 Total Motor and P-CTSIB-2. CONCLUSION: Preliminary results support improved sensory adaptation, balance, and motor performance post-STABEL, which warrant further study with a larger, randomized sample.

Clinical improvements in adopted children with fetal alcohol spectrum disorders through neurodevelopmentally informed clinical intervention: A pilot study.

Research on early intervention for young children (infants and toddlers) with fetal alcohol spectrum disorders (FASD), particularly children with comorbid maltreatment experiences, is limited. Existing research has primarily focused on structuring environments to be responsive to the needs experienced by children with FASD rather than improving their functioning. The purpose of this study is to present outcomes from an early psychosocial intervention with 10 adopted, maltreated young children diagnosed with FASD, aged 10-53 months (M = 35 months), and their adoptive parents. The potential for early, targeted interventions to improve developmental outcomes for children with prenatal alcohol exposure was examined, as well as improving the skills of and reducing stress experienced by their adoptive parents. Based on the outcomes of a neurodevelopmentally informed assessment protocol, the 10 children whose data are presented were recommended to receive a range of regulatory, somatosensory, relational, and cognitive enrichments. As part of their treatment, children and caregivers received Child-Parent Psychotherapy (CPP), and caregivers (here, adoptive parents) also received Mindful Parenting Education (MPE). Related-samples Wilcoxon signed-rank tests indicated that scores of several measures of child developmental functioning improved from pre- to post-intervention and that parents' caregiving skills improved while their caregiving stress decreased. Reliable change analyses indicated that change observed from pre- to post-intervention was reliable. The promise of using neurodevelopmentally informed assessment strategies to sequence interventions for young children with diverse neurodevelopmental insults is discussed.

Community translation of the Math Interactive Learning Experience Program for children with FASD.

The Math Interactive Learning Experience (MILE), a program designed to address academic and behavioral problems found in children with Fetal Alcohol Spectrum Disorders (FASD), was found to be effective in a randomized clinical trials with results that persisted at a 6-month follow-up. The current study evaluated the effectiveness of a community translation, in partnership with several community sites in the metropolitan Atlanta area. A total of 60 participants were randomly assigned to one of the three treatment groups: the MILE program administered at a specialty care center (Center MILE) or in the community (Community MILE), or to parent math instruction only (Parent Instruction). This study evaluated instructor satisfaction with the training program, knowledge related to FASD and the MILE program, adherence to the MILE teaching methodology, participant math outcomes, and parents' satisfaction with their treatment experience. Instructors reported a high degree of satisfaction with the overall training and mean site fidelity ratings were positively correlated with change in math performance. Those in the MILE intervention groups demonstrated more positive gains in math skills than those in the Parent Instruction group but did not differ from each other. Parents in the Parent Instruction group reported less satisfaction with their intervention than those assigned to the Center MILE group but satisfaction ratings did not differ between those in the MILE intervention groups. These results indicate that the community translation and the MILE instructor training program developed as part of this process were well-received and effective in producing positive treatment outcomes.

Functional handwriting performance in school-age children with fetal alcohol spectrum disorders.

Handwriting is a critical skill for school success. Children with fetal alcohol spectrum disorders (FASD) often present with fine motor and visual-motor impairments that can affect handwriting performance, yet handwriting skills have not been systematically investigated in this clinical group. This study aimed to comprehensively describe handwriting skills in 20 school-age children with FASD. Children were tested with the Process Assessment of the Learner, 2nd Edition (PAL-II), and the Visuomotor Precision subtest of NEPSY, a developmental neuropsychological assessment. Participants performed below average on PAL-II measures of handwriting legibility and speed and on NEPSY visual-motor precision tasks. In contrast, PAL-II measures of sensorimotor skills were broadly within the average range. Results provide evidence of functional handwriting challenges for children with FASD and suggest diminished visual-motor skills and increased difficulty as task complexity increases. Future research is needed to further describe the prevalence and nature of handwriting challenges in this population.

Children and adolescents with fetal alcohol syndrome (FAS): better social and emotional integration after early diagnosis.

BACKGROUND: Alcoholism during pregnancy is one of the most common factors in western societies causing persisting congenital and multiple physical as well as neurological impairments. Finding the diagnosis at first sight puts medical professionals into a demanding situation. Therefore the objective of this study was to detect patients' developmental characteristics with the main focus on the necessity of the diagnosis itself. PATIENTS: 125 young patients, whose diagnosis of fetal alcohol syndrome (FAS) was made at the Muenster University Hospital, were followed up. METHODS: Biographic details such as living conditions, health, developmental problems and educational career were gathered using a structured interview. The diagnosis itself and the impact of this on the patients were also explored. RESULTS: Patients displayed characteristics of a less mature trait of character. The majority were looked after by foster parents. High rates of social and developmental problems could be found. The diagnosis was identified as a protective factor, with significantly better outcomes for patients being diagnosed in early childhood. A diagnosis established later in life was particularly helpful for the families and caregivers. Feelings of failure and self-blame could be diminished. CONCLUSIONS: The early detection of affected children has to be improved as receiving the correct diagnosis, despite the persistent impairments, is of major benefit for both patients and their families.

The effectiveness of a community-based intervention for parents with FASD.

The purpose of this study was to evaluate the effectiveness of the Step by Step program in which mentors work with parents affected by Fetal Alcohol Spectrum Disorder (FASD) on a one-to-one basis. Mentors help clients identify and work towards meeting their needs and achieving their goals. Data from 24 closed client files was collected and analyzed and as predicted, the program was effective in helping clients reduce their needs and achieve their goals. The clients' reason for leaving the program as well as whether or not they had a formal FASD diagnosis had an impact on their success in the program. Data collected on additional mental health issues, experience of abuse and addictions helped to characterize the sample of clients and correlations were found between clients' experience of abuse and their past and/or present addictions issues. Limitations of this study as well as future implications were also discussed.