Abstracts

Bronell M, Hanlon-Dearman A, Macwilliam L, Chudley A, et al.

Use of health, education and social services by individuals with Fetal Alcohol Spectrum Disorder

Journal of Population Therapeutics and Clinical Pharmacology 20(2), 2013, e95–e106, Canada

FASD is the leading cause of intellectual disability in western society, presenting a significant burden on health, education and social services. Quantifying this burden is important for service planning and policy and programme development. The aim was to describe the health, education and social services use of individuals with FASD to provide an indication of the burden of service use of the disorder. Using a matched cohort design, health, education and social services data were linked with clinical records on individuals 6+ years diagnosed with FASD between 1999/2000 and 2009/10 (n = 717). Matching was 2:1 with a general population and asthma group by age, sex and area-level income. Adjusted rates and relative risks were calculated using Generalized Linear Models. Hospitalisations were higher in the FASD compared to the general population and asthma groups, whereas for physician visits and overall prescriptions, the FASD group differed from only the general population group. Antibiotics, painkillers and anti-psychotics were similar across groups whereas antidepressants and psychostimulants were higher in the FASD group. ADHD was higher in the FASD than the general population and asthma groups. Education and social services use was higher for the FASD than either of the other groups for all measures: receipt of any special education funding; family receipt of income assistance; child in care; and receipt of child welfare services. The findings highlight the need for multisystem supports for those with FASD and comprehensive prevention programmes.

Dumont L

Exploring strategies developed by parents to support their adopted children with foetal alcohol spectrum disorder

Masters dissertation, University of London, Goldsmiths College, 2011, UK

The purpose of this MA dissertation was to discover the strategies developed by adoptive parents to support their children with FASD. The paper begins with a literature review looking at how prenatal exposure to alcohol affects foetal development, and how it manifests in the child and young person’s behaviour, cognition, educational achievement, and ability to integrate into society. Nine participants were interviewed for the qualitative phase of the project. Analysis of these interviews revealed that the adoptive parents faced similar struggles in regards to keeping their children safe and obtaining adequate educational provisions. All the participants mentioned the importance of routine, consistency and repetition. They expressed frustration and, at times, anger with professionals (e.g. social care, health and education agencies) when confronted by a lack of awareness and understanding of FASD, as well as disbelief of their experiences and dismissal of their knowledge and expertise as adoptive parents with regard to their children’s condition.

Goh YI, Chudley AE, Clarren SK, Koren G, Orrbine E, Rosales T and Rosenbaum C

Task force for development of FASD screening tools: development of Canadian screening tools for Fetal Alcohol Spectrum Disorder

Canadian Journal of Clinical Pharmacology 15(2), 2008, e344–e66, Canada

FASD is the most common cause of neuro-behavioural disability in North America. Screening for it may facilitate diagnosis and hence management of these children. We present a variety of screening tools for the identification of children at risk for FASD. We critically reviewed and evaluated published and practised methods for their potential of screening suspected cases, their epidemiological characteristics (sensitivity, specificity, positive and negative predictive values) [Phase I], as well as their feasibility [Phase II]. The following five tools were selected for the FASD screening toolkit: screening fatty acid ethyl esters in neonatal meconium; the modified Child Behaviour Checklist; Medicine Wheel tool; Asante Centre Probation Officer Tool; and maternal history of drinking and drug use. By screening different populations, from newborns to young people and at-risk mothers, it is anticipated that the toolkit will facilitate diagnosis of FASD.

Gralton E

Foetal alcohol spectrum disorder (FASD): its relevance to forensic adolescent services

Journal of Intellectual Disabilities and Offending Behaviour 5(3), 2014, pp.124–137, UK

There needs to be an increased recognition of FASD in services that deal with young people with disruptive and offending behaviour, not just those services that deal with adolescents with a recognised intellectual disability. This is a general review of the current available evidence on FASD and how it is likely to predispose affected young people to have contact with secure mental health services and the criminal justice system. FASD is likely to have become a more common cause of intellectual disability and behavioural disturbance but the history of significant alcohol exposure in utero is often missed. There is evidence that the hyperactivity is less responsive to psychotropic medication and may represent a different condition to conventional ADHD. However the majority of those affected are in the low normal IQ range. There is so far very limited research into what is likely to be a relatively common disorder with significant costs to criminal justice, mental health care and social services. Epidemiological information from the UK is lacking and urgently needed. Professionals who work with mentally disordered young people need to be more aware of FASD and its potential contribution to the problems and disabilities in their population. Social workers, foster carers and adoptive parents also need to be more aware of FASD and how it can contribute to the breakdown of social care. There is currently no other review of FASD and the implications for criminal justice, secure mental health and social care for young people.

Marcellus L

Supporting resilience in foster families: a model for program design that supports recruitment, retention, and satisfaction of foster families who care for infants with prenatal substance exposure

Child Welfare Journal 89(1), 2010, pp. 7–29, Canada

The aim of this qualitative research study, conducted in British Columbia, Canada, was to identify the process of becoming a foster family and providing family foster caregiving within the context of caring for infants with prenatal drug and alcohol exposure. The sample consisted of 11 families in five different communities, with data collection through family interviews. The study identified a process for foster families developing expertise in this field, and the article describes three main phases: preparing to foster, living as a foster family, and ending the fostering role. It explores the steps within each phase experienced by foster families, and the application of a resiliency framework to the foster care model to indicate how adaptations to the work and function of relationships within the system may help to strengthen the support of foster families, potentially resulting in improved retention and satisfaction.

Proven S

The language profile of school-aged children with Fetal Alcohol Spectrum Disorder (FASD)

Canadian Journal of Speech Language Pathology and Audiology 37(4), 2014, pp. 268–279, Canada

A population-based study of school age children diagnosed with FASD was conducted to evaluate the language abilities of these children and describe their language strengths and weaknesses. A retrospective chart review methodology was applied to examine their language abilities. Secondary data from 124 children aged 5 to 18 years, who were diagnosed with FASD between January 2005 and October 2010, were included in the study. Results from the CELF-4 language assessment tool were analysed to compare the language abilities of these children. This study revealed globally poor performance across expressive and receptive language abilities, suggesting that language development is significantly affected by prenatal alcohol exposure. The Core Language Index Scores (total test scores) showed almost 70% of the participants received a language rating of ‘severe’ (indicating significant communication impairments). About 20% had a rating of either ‘moderate’ or ‘mild’, and fewer than 15% had a rating of ‘average’. Approximately 85% of the sample experienced mild to severe language delays in the index categories. The 5- to 8-year-old age group had the highest average scores in all index categories, whereas the 9-year-olds consistently had the lowest average scores. The changing profile by age group is significant with important ramifications on longitudinal language testing and programming. A better understanding of language abilities in children with prenatal alcohol exposure may lead to improved planning for language interventions.

Wengel T, Hanlon-Dearman A and Fjeldsted B

Sleep and sensory characteristics in young children with FASD

Journal of Developmental Behavioural Pediatrics 32(5), 2011, pp. 384–392, USA

Sleep disruption has been recognised as a clinically important symptom of FASD that has multiple negative effects on the child’s health, ability to function adaptively, as well as on family and caregivers. However, few studies have addressed and characterised the sleep problems in this population. The objective of this study was to characterise sleep in FASD and describe the impact of sensory processing difficulties on sleep patterns in children with FASD. Children with FASD were compared with age-matched typically developing children between three and six years of age. Sleep was assessed using actigraphy, a sleep log, and the Children’s Sleep Habits Questionnaire. The Sensory Profile™, completed by caregivers, was used to evaluate the child's sensory processing abilities. Overall differences in sensory processing were correlated with actigraphic parameters measured in alcohol exposed and control groups. Data show that children with FASD have significantly more sleep disturbances than typically developing children, including increased bedtime resistance, shortened sleep duration, increased sleep anxiety, and increased night awakenings and parasomnias. Actigraphy reveals a significant difference between groups for sleep onset latency. This study demonstrates that sensory processing deficits are widespread in children with FASD and that these deficits are associated with multiple sleep problems. Children with FASD should be screened for sleep-related disorders and would benefit from occupational therapy for sensory-based treatment aimed at sleep regulation and consolidation.

Whitehurst T

Raising a child with foetal alcohol syndrome: hearing the parent voice

British Journal of Learning Disabilities 40(3), September 2012, pp.187–193, UK

FASD covers a range of conditions, including foetal alcohol syndrome (FAS), which impact upon a child’s physical, mental, cognitive and behavioural development. Learning of a child’s disability can be a difficult time for any parent. However, parents of children with FASD may have additional difficulties around professional understanding, acknowledgement of the disorder and availability of appropriate support services and structures. The aim of this study was to explore the experiences of both adoptive and birth parents of children with a diagnosis of FAS. Four mothers (3 adoptive and 1 birth) took part in an interview to describe what life was like for them. Six overarching themes emerged from analysis of these stories: first becoming aware that something was wrong; experiencing the disorder as a challenge; experiencing difference; experiencing emotional conflict; experiencing disability; and experiencing support. The findings show that for families to feel supported by professionals, they need to be listened to and their concerns to be heard and acted upon.