Lived experiences of the diagnostic assessment process for fetal alcohol spectrum disorder: A systematic review of qualitative evidence.

Early assessment and diagnosis of FASD are crucial in providing therapeutic interventions that aim to enhance meaningful participation and quality of life for individuals and their families, while reducing psychosocial difficulties that may arise during adolescence and adulthood. Individuals with lived experience of FASD have expertise based on their own lives and family needs. Their insights into the assessment and diagnostic process are valuable for improving service delivery and informing the provision of meaningful, person- and family-centered care. To date, reviews have focused broadly on the experiences of living with FASD. The aim of this systematic review is to synthesize qualitative evidence on the lived experiences of the diagnostic assessment process for FASD. Six electronic databases, including PubMed, the Cochrane Library, CINAH, EMBASE, PsycINFO, and Web of Science Core Collection were searched from inception until February 2021, and updated in December 2022. A manual search of reference lists of included studies identified additional studies for inclusion. The quality of included studies was assessed using the Critical Appraisal Skills Program Checklist for Qualitative Studies. Data from included studies were synthesized using a thematic analysis approach. GRADE-CERQual was used to assess confidence in the review findings. Ten studies met the selection criteria for inclusion in the review. Thematic analysis identified 10 first-level themes relating to four over-arching topics: (1) pre-assessment concerns and challenges, (2) the diagnostic assessment process, (3) receipt of the diagnosis, and (4) post-assessment adaptations and needs. GRADE-CERQual confidence ratings for each of the review themes were moderate to high. The findings from this review have implications for referral pathways, client-centered assessment processes, and post-diagnostic recommendations and support.

Fetal alcohol spectrum disorders screening tools: A systematic review.

BACKGROUND: Screening facilitates the early identification of fetal alcohol spectrum disorder (FASD) and prevalence estimation of FASD for timely prevention, diagnostic, and management planning. However, little is known about FASD screening tools. AIMS: The aims of this systematic review are to identify FASD screening tools and examine their performance characteristics. METHODS: Four electronic databases were searched for eligible studies that examined individuals with FASD or prenatal alcohol exposure and reported the sensitivity and specificity of FASD screening tools. The quality of the studies was assessed using the Quality Assessment of Diagnostic Studies-2 tool. RESULTS: Sixteen studies were identified, comprising five fetal alcohol syndrome (FAS) and seven FASD screening tools. They varied in screening approach and performance characteristics and were linked to four different diagnostic criteria. FAS screening tools performed well in the identification of individuals at risk of FAS while the performance of FASD screening tools varied in the identification of individuals at risk of FASD. CONCLUSION AND IMPLICATIONS: Results highlight the vast differences in the screening approaches performance characteristics, and diagnostic criteria linked to FASD screening tools. More research is needed to identify biomarkers unique to FASD to guide the development of accurate FASD screening tools.

Oral and written communication skills of adolescents with prenatal alcohol exposure (PAE) compared with those with no/low PAE: A systematic review.

BACKGROUND: Prenatal alcohol exposure (PAE) is associated with growth deficits and neurodevelopmental impairment including foetal alcohol spectrum disorder (FASD). Difficulties with oral and written communication skills are common among children with PAE; however, less is known about how communication skills of adolescents who have PAE compare with those who do not. Adolescence is a critical time for development, supporting the transition into adulthood, but it is considered a high-risk period for those with FASD. AIMS: We conducted a systematic review to synthesize evidence regarding oral and written communication skills of adolescents with PAE or FASD and how they compare with those with no PAE. METHODS & PROCEDURES: A comprehensive search strategy used seven databases: Cochrane Library, Cinahl, Embase, Medline, PsycInfo, Eric and Web of Science. Included studies reported on at least one outcome related to oral and written communication for a PAE (or FASD) group as well as a no/low PAE group, both with age ranges of 10-24 years. Quality assessment was undertaken. MAIN CONTRIBUTION: Communication skills most often assessed in the seven studies included in this review were semantic knowledge, semantic processing, and verbal learning and memory. These communication skills, in addition to reading and spelling, were commonly weaker among adolescents with PAE compared with those with no/low PAE. However, the findings were inconsistent across studies, and studies differed in their methodologies. CONCLUSIONS & IMPLICATIONS: Our results emphasize that for adolescents with PAE, communication skills in both oral and written modalities should be comprehensively understood in assessment and when planning interventions. A key limitation of the existing literature is that comparison groups often include some participants with a low level of PAE, and that PAE definitions used to allocate participants to groups differ across studies. WHAT THIS PAPER ADDS: What is already known on the subject PAE and FASD are associated with deficits in oral and written communication skills. Studies to date have mostly focused on children with a FASD diagnosis as well as combined groups of children and adolescents with FASD or PAE. There is a gap in what is known about oral and written communication skills of adolescents, specifically, who have PAE or FASD. This has implications for the provision of assessment and supports during a period of increased social and academic demands. What this study adds to existing knowledge This review provides systematic identification, assessment and synthesis of the current literature related to oral and written communication skills of adolescents with PAE compared with those with no/low PAE. The review revealed a small knowledge base with inconsistent methodologies and findings across studies. However, the findings overall highlight that adolescents with PAE have weaker skills in oral and written language than those with no/low PAE. Results are discussed in relation to education, social and emotional well-being, and forensic contexts. What are the potential or actual clinical implications of this work? Findings emphasize that for adolescents with PAE, comprehensive assessment of both oral and written communication skills, through both standardized and functional tasks, should be undertaken. Speech-language pathologists have a key role in assessment with individuals who have PAE.

The oral and written narrative language skills of adolescent students in youth detention and the impact of language disorder.

BACKGROUND: Unmet language and literacy needs are common among young people who are involved with youth justice systems. However, there is limited research regarding the functional text-level language skills of this population with regard to narrative macrostructure (story grammar) and microstructure (semantics and syntax) elements. METHODS: In this study, we examined macrostructure and microstructure elements in the oral and written narrative texts of 24 adolescent students of a youth detention centre. The students, who were aged 14- to 17- years, were all speakers of Standard Australian English, and 11 (46%) students met criteria for language disorder (LD). FINDINGS: When we compared the narratives according to modality of language, the students demonstrated stronger narrative language skills in the written modality compared to the oral. However, when we compared the narratives according to language ability, we found that the impact of LD on inclusion of macrostructure elements was greater in the oral modality, and for microstructure elements, was greater in the written modality. Errors in written conventions were common among both students with and without LD. CONCLUSIONS: Our results indicate that both the modality of language as well as the presence of LD should be considered when young people are required to participate in forensic contexts including programs that address educational and rehabilitation needs. Our results indicate a need for consistent text-level language assessment to better identify and respond to functional difficulties within language and literacy. There is potential for speech-language pathology services to enhance comprehensive assessment as well as inform educational and rehabilitation programs for young people who are involved with youth justice systems.

It takes a village: Influencing policy and practice to prevent alcohol use in pregnancy and promote better outcomes for individuals living with Fetal Alcohol Spectrum Disorder.

Fetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental disorder caused by exposure to alcohol in utero. It has pervasive, lifelong impacts and is recognised as a major public health concern in many countries where alcohol is used. The FASD Research Australia Centre of Research Excellence (CRE) was funded by the National Health and Medical Research Council to generate and translate evidence to address prevention, diagnosis, and management of FASD in Australia. The current paper describes the approach to policy and practice impact taken by our CRE, including our stakeholder engagement processes and the key principles that underlie our approach. We provide examples of policy and practice influence in FASD prevention, diagnosis and management that have been achieved over the past five years and discuss challenges that are routinely faced in the translation of our work.

Fetal alcohol spectrum disorder: the importance of assessment, diagnosis and support in the Australian justice context.

Fetal alcohol spectrum disorder (FASD) is a neurodevelopmental condition with life-long implications. Individuals with FASD can experience communication, cognitive, behavioural, social and emotional difficulties that impact their functional capacity. Due to these brain-based impairments, previous research suggests that individuals with FASD are over-represented in the justice system. The current article outlines how individuals with FASD may experience inequities within the justice system, why assessment, diagnosis and intervention is important, and the role of health and justice partnerships in promoting more equitable outcomes for justice-involved individuals with FASD. Increased resources and collaborations between health and justice professionals are required to enable the provision of neurodevelopmental assessments for all complex presentations, including FASD.

Language diversity, language disorder, and fetal alcohol spectrum disorder among youth sentenced to detention in Western Australia.

BACKGROUND: While studies confirm high prevalence of language disorder among justice-involved young people, little is known about the impact of Fetal Alcohol Spectrum Disorder (FASD) on language among this population. It is also not clear how language skills vary according to language diversity in Australian youth justice settings, where a disproportionate number of justice-involved youth are Aboriginal and may not speak Standard Australian English (SAE) as their first language. Language skills are important to understand, as language disorder and language difference can lead to a mismatch between the communication skills of a young person and the communication skills of the justice workforce with whom they are communicating. In the highly verbal environments that are common to justice systems, language disorder and language difference may result in a young person misunderstanding legal information and expectations placed on them and not being adequately understood by the justice workforce. METHODS: This study examined the language skills of 98 young people sentenced to detention in Western Australia (WA), who participated in a cross-sectional study examining the prevalence of FASD. Language skills assessed using standardised and non-standardised tasks were analysed by the three major language groups identified: speakers of SAE, Aboriginal English and English as an additional language. RESULTS: We identified rich diversity of languages, and multilingualism was common. Most young people for whom English was not their first language demonstrated difficulties in SAE competence. Further, nearly one in two young people were identified with language disorder - over half of whom had language disorder associated with FASD. CONCLUSIONS: This study has documented language diversity and the prevalence of language disorder associated with FASD among a representative sample of youth sentenced to detention in WA. Results underscore the need for the justice workforce to consider language difference when working with justice-involved youth, as well as language disorder and FASD. The findings also demonstrate the need for speech pathology to be embedded as core service in youth justice systems, working in collaboration with local cultural and language advisors and accredited interpreters. This can better enable appropriate identification of and response to communication and associated rehabilitation needs of young people navigating youth justice systems.

Fetal alcohol spectrum disorder and youth justice: a prevalence study among young people sentenced to detention in Western Australia.

OBJECTIVES: To estimate the prevalence of fetal alcohol spectrum disorder (FASD) among young people in youth detention in Australia. Neurodevelopmental impairments due to FASD can predispose young people to engagement with the law. Canadian studies identified FASD in 11%-23% of young people in corrective services, but there are no data for Australia. DESIGN: Multidisciplinary assessment of all young people aged 10-17 years 11 months and sentenced to detention in the only youth detention centre in Western Australia, from May 2015 to December 2016. FASD was diagnosed according to the Australian Guide to the Diagnosis of FASD. PARTICIPANTS: 99 young people completed a full assessment (88% of those consented; 60% of the 166 approached to participate); 93% were male and 74% were Aboriginal. FINDINGS: 88 young people (89%) had at least one domain of severe neurodevelopmental impairment, and 36 were diagnosed with FASD, a prevalence of 36% (95% CI 27% to 46%). CONCLUSIONS: This study, in a representative sample of young people in detention in Western Australia, has documented a high prevalence of FASD and severe neurodevelopmental impairment, the majority of which had not been previously identified. These findings highlight the vulnerability of young people, particularly Aboriginal youth, within the justice system and their significant need for improved diagnosis to identify their strengths and difficulties, and to guide and improve their rehabilitation.

Study protocol for screening and diagnosis of fetal alcohol spectrum disorders (FASD) among young people sentenced to detention in Western Australia.

INTRODUCTION: Prenatal alcohol exposure can cause lifelong disability, including physical, cognitive and behavioural deficits, known as fetal alcohol spectrum disorders (FASD). Among individuals with FASD, engagement with justice services is common. Little is known about the prevalence of FASD among young people engaged with the Australian justice system. This study aims to establish FASD prevalence among sentenced young people in detention in Western Australia (WA), and use the findings to develop a screening tool for use among young people entering detention. Translation of these results will guide the management and support of young people in detention and will have significant implications on the lives of young people with FASD and the future of Australian youth justice services. METHODS AND ANALYSIS: Any sentenced young person in WA aged 10-17 years 11 months is eligible to participate. Young people are assessed for FASD by a multidisciplinary team. Standardised assessment tools refined for the Australian context are used, acknowledging the language and social complexities involved. Australian diagnostic guidelines for FASD will be applied. Information is obtained from young people, responsible adults, teachers and custodial officers. Individualised results and management plans for each young person are communicated to the young person and responsible adult. Prevalence of FASD will be reported and multivariate methods used to identify variables most predictive of FASD and to optimise the predictive value of screening. ETHICS AND DISSEMINATION: Approvals have been granted by the WA Aboriginal Health Ethics Committee, University of WA Human Research Ethics Committee, Department of Corrective Services, and Department for Child Protection and Family Support. Anonymised findings will be disseminated through peer-reviewed manuscripts, presentations and the media. Extensive consultation with stakeholders (including government agencies, detention centre staff, community service providers, the young people and their families or carers) will be ongoing until findings are disseminated and translated.