A fetal alcohol spectrum disorder diagnostic service and beyond: Outcomes for families

Doak, Jessica; Katsikitis, Mary; Webster, Heidi; Wood, Andrew

doi:10.1016/j.ridd.2019.103428

Cited by 16 publications

(46 citation statements)

References 26 publications

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“…Early identification, assessment, and/or diagnosis of FASD, coupled with the provision of individualized intervention services and supports, have been identified as key protective factors that mitigate adverse outcomes experienced by individuals with FASD (McLachlan et al, 2020; Popova et al, 2020; Streissguth et al, 2004). Formal recognition and/or diagnosis of FASD in children and adolescents may also confer additional important benefits, including easier access to appropriate supports, better understanding of an individual's strengths and challenges, formation of peer and caregiver support networks, and improved communication among the circle of care (Doak et al, 2019; Helgesson et al, 2018). Identification of FASD remains critical in adulthood given the life‐course nature of the difficulties experienced by those with FASD, and because evidence suggests that adult‐oriented interventions can lead to valuable outcomes, such as reductions in substance use and improved relationships (Brintnell et al, 2019; Denys et al, 2011).…”

Section: Introductionmentioning

confidence: 99%

Screening approaches for identifying fetal alcohol spectrum disorder in children, adolescents, and adults: A systematic review

Grubb

Golden

Withers

et al. 2021

Alcoholism Clin & Exp Res

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Background Fetal alcohol spectrum disorder (FASD) is a prevalent neurodevelopmental disorder that is caused by prenatal alcohol exposure (PAE) and associated with a range of cognitive, affective, and health concerns. Although the identification of FASD can facilitate the provision of interventions and support, and plays a protective role against adverse outcomes, there are high rates of missed detection. The identification of FASD via screening may improve its recognition across settings. The current systematic review examined the available evidence on FASD screening tools and approaches across age groups and settings. Methods A systematic search was carried out for both peer‐reviewed studies and gray literature sources published between January 1990 and May 2020 and was preregistered with PROSPERO (#CRD42019122077). Studies included in the review focused on human applications of FASD screening in children, adolescents, and adults. The quality of the studies was assessed using the QUADAS‐2 and GRADE frameworks. Results The search yielded 20 screening tools and approaches across 45 studies, broadly characterized in 2 groups. The first group included approaches currently in use that aim to identify individuals at risk of FASD using a range of markers (n = 19) or associated sentinel dysmorphic facial features (n = 6). Another group of studies, characterized as emerging, focused on identifying promising biomarkers of PAE/FASD (n = 20). Overall, we identified limited research supporting the psychometric properties of most screening approaches. The quality review provided evidence of bias due to the common use of case–control designs and lack of adequate reference standards. Conclusions Although several FASD screening tools and approaches are available for use across a range of age groups and settings, the overall evidence base supporting their psychometric properties is weak, with most studies demonstrating significant risk of bias. Service providers should exercise caution in selecting and implementing FASD screening tools given these limitations. It is critically important to accurately identify individuals with FASD across ages and settings to support healthy outcomes. Thus, there is a pressing need for additional research in this area, particularly validation studies in large and representative samples using robust methodological approaches.

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Section: Introductionmentioning

confidence: 99%

Screening approaches for identifying fetal alcohol spectrum disorder in children, adolescents, and adults: A systematic review

Grubb

Golden

Withers

et al. 2021

Alcoholism Clin & Exp Res

View full text Add to dashboard Cite

show abstract

“…2017, Doak, et al . 2019) have explored FASD diagnostic experiences for caregivers, though neither discussed nor differentiated between Aboriginal and non‐Aboriginal Australian caregivers. The studies found that the experience of diagnosis was validating (Chamberlain et al .…”

Section: Introductionmentioning

confidence: 99%

“…Caregivers saw benefit in diagnosis from raised awareness of children’s problems being attributed to neurodevelopmental impairments, and from recommendations and supports provided during the diagnostic process (Doak et al . 2019). However, a lack of access to long‐term services tailored to children’s needs left caregivers feeling alone and unsupported (Chamberlain et al .…”

Section: Introductionmentioning

confidence: 99%

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‘That thing in his head’: Aboriginal and non‐Aboriginal Australian caregiver responses to neurodevelopmental disability diagnoses

Hamilton

Maslen

Watkins

et al. 2020

Sociology Health & Illness

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Little is known about the significance of cultural differences to how caregivers receive a diagnosis of neurodevelopmental disability. As part of a Fetal Alcohol Spectrum Disorder prevalence study among sentenced, detained youth, our qualitative study explored the experiences of diagnostic assessment among detained young people and their caregivers. We present findings from the perspectives of caregivers. In conversation with the sociology of diagnosis literature, we present vignettes of three Aboriginal and two non-Aboriginal caregivers' experiences of the diagnostic assessment process. We found that Aboriginal caregivers conceptualised their children's diagnosis and ongoing management in the context of their family networks and community. In contrast, non-Aboriginal caregivers focused on how the diagnosis would affect their child and interactions with various institutions including healthcare systems and schools. Caregivers' engagement with diagnostic reports and resources also followed cultural lines. Reflections on intergenerational drinking were voiced by Aboriginal caregivers, who expressed shame at receiving diagnosis. These findings advance our appreciation of cultural difference in receiving a diagnosis, the examination of which is in its nascent stages. We also suggest ways to mitigate harm from a stigmatising diagnosis and soften the well-established effects of medical dominance over the process of defining a person's capacity and status.

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“…A retrospective chart review was conducted, data were extracted, de‐identified and analysed. The current study was part of a larger study which explored client experience regarding the FASD assessment process …”

Section: Methodsmentioning

confidence: 99%

Community‐based child development service fetal alcohol spectrum disorder assessment: A retrospective clinic audit

Webster

Doak

Katsikitis

2020

J Paediatrics Child Health

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Aims:The aims of the current study were to: (i) report on the diagnostic profile of a group of children assessed for fetal alcohol spectrum disorder (FASD) using the Australian Guide to the Diagnosis of FASD; and (ii) to provide information and recommendations for paediatricians and/or multidisciplinary teams conducting FASD assessments, including utilising the Australian Guide to the Diagnosis of FASD, and details of how to do FASD assessment. Methods: A retrospective chart review was conducted using relevant demographic and diagnostic data from children assessed for FASD within a community child development service. Results: Results showed the widespread impact of FASD on the brain, with all children showing some level of impairment in at least 5 out of 10 of the neurodevelopmental domains assessed for FASD. Majority of children were diagnosed with co-morbid attention deficit hyperactivity disorder, however, many additional co-morbid diagnoses were evident. Conclusions: The current study detailed the profile of children assessed for FASD and was the first to report the diagnostic profile of children assessed using the Australian Guide to the Diagnosis of FASD within a community child development service. Several recommendations are provided to assist paediatricians and multidisciplinary teams involved in child development assessments.

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A fetal alcohol spectrum disorder diagnostic service and beyond: Outcomes for families

Cited by 16 publications

References 26 publications

Screening approaches for identifying fetal alcohol spectrum disorder in children, adolescents, and adults: A systematic review

Screening approaches for identifying fetal alcohol spectrum disorder in children, adolescents, and adults: A systematic review

‘That thing in his head’: Aboriginal and non‐Aboriginal Australian caregiver responses to neurodevelopmental disability diagnoses

Community‐based child development service fetal alcohol spectrum disorder assessment: A retrospective clinic audit

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