Scoping review on the role of the family doctor in the prevention and care of patients with foetal alcohol spectrum disorder.

BACKGROUND: Foetal alcohol spectrum disorder (FASD) is the leading preventable cause of nongenetic mental disability. Given the patient care pathway, the General Practitioner (GP) is in the front line of prevention and identification of FASD. Acknowledging the importance of the prevalence of FASD, general practitioners are in the front line both for the detection and diagnosis of FASD and for the message of prevention to women of childbearing age as well as for the follow-up. OBJECTIVES: The main objective of the scoping review was to propose a reference for interventions that can be implemented by a GP with women of childbearing age, their partners and patients with FASD. The final aim of this review is to contribute to the improvement of knowledge and quality of care of patients with FASD. METHODS: A scoping review was performed using databases of peer-reviewed articles following PRISMA guidelines. The search strategy was based on the selection and consultation of articles on five digital resources. The advanced search of these publications was established using the keywords for different variations of FASD: "fetal alcohol syndrome," "fetal alcohol spectrum disorder," "general medicine," "primary care," "primary care"; searched in French and English. RESULTS: Twenty-three articles meeting the search criteria were selected. The interventions of GPs in the management of patients with FASD are multiple: prevention, identification, diagnosis, follow-up, education, and the role of coordinator for patients, their families, and pregnant women and their partners. FASD seems still underdiagnosed. CONCLUSION: The interventions of GPs in the management of patients with FASD are comprehensive: prevention, identification, diagnosis, follow-up, education, and the role of coordinator for patients, their families, and pregnant women and their partners. Prevention interventions would decrease the incidence of FASD, thereby reducing the incidence of mental retardation, developmental delays, and social, educational and legal issues. A further study with a cluster randomized trial with a group of primary care practitioners trained in screening for alcohol use during pregnancy would be useful to measure the impact of training on the alcohol use of women of childbearing age and on the clinical status of their children.

Neuropsychological profiles of adolescents sentenced to detention in Western Australia with and without prenatal alcohol exposure.

BACKGROUND/AIMS: Youth with prenatal alcohol exposure (PAE) are under-recognised in the justice system, warranting improved identification. This study aimed to compare neuropsychological profiles of adolescents, with and without PAE and identify neuropsychological tasks predictive of PAE-group membership. It was hypothesised that participants with PAE would score significantly lower on neuropsychological tests. METHODS: Participants included 85 young people sentenced to detention (mean 15.7 years, 78 males), 46 with PAE. A one-way-multivariate analysis of variance tested differences in neuropsychological functioning between PAE/No-PAE groups, while logistic regression determined tests predictive of PAE. RESULTS: No statistically significant difference in test scores emerged between groups, and regression was not indicative of any models predictive of PAE-group membership. Neuropsychological profiles were characterised by both strengths and weaknesses, with lower verbal and mathematical skills. CONCLUSION(S): While no statistically significant differences were found between the groups, the results provided a unique insight into the neurocognitive profile of Australian youth in detention. Routine screening assessments were recommended for young people sentenced to detention.

Exploring the experience of service users following attendance at a student-led interprofessional neurodevelopmental clinic.

PURPOSE: The aim of the current study was to understand service users' experiences at a recently established student-led interprofessional neurodevelopmental clinic for children and adolescents with suspected or confirmed prenatal alcohol exposure. METHOD: Semi-structured interviews were completed at 3-months post-clinic attendance with 10 service users: eight parents/caregivers and two youth workers/case managers. Interview data were analysed thematically using NVivo12. RESULTS: Four main themes were developed: (1) clinic attendance seen as a positive event; (2) validation, clarification, and relief, but also challenges post-assessment; (3) need for further support and importance of advocacy; and (4) drawing on lived experiences for future service improvements. CONCLUSIONS: The current study demonstrated that service users reported benefits from tailored services delivered by student practitioners that were validating, supportive, and holistic. Findings from the current study can inform the development and implementation of future innovative service delivery models for individuals with suspected or confirmed prenatal alcohol exposure.

People with fetal alcohol spectrum disorder (FASD) can experience a range of neurocognitive impairments that impact their day-to-day living.Access to assessment, early diagnosis, and appropriate supports are important protective factors associated with improved outcomes for individuals with FASD.Results highlighted the benefits to rehabilitation professionals of listening to service users to understand the complexity of their lived experiences, including how this information can be used to improve service design and delivery.Results also highlighted the potential role of incorporating student-led clinics within models of healthcare and rehabilitation service delivery.Utilising student-led clinics can help to increase access to specialised services for underserved groups in our community, combat shortages in the health workforce, reduce burden on the public health system, and educate the future of rehabilitation professionals.

Exploring offending characteristics of young people with foetal alcohol spectrum disorder in Western Australia.

Neurodevelopmental impairments resulting from Foetal Alcohol Spectrum Disorder (FASD) can increase the likelihood of justice system involvement. This study compared offence characteristics in young people with FASD to demographically matched controls (n = 500) in Western Australia. A novel approach (i.e. association rule mining) was adopted to uncover relationships between personal attributes and offence characteristics. For FASD participants (n = 100), file records were reviewed retrospectively. Mean age of the total sample was 15.60 years (range = 10-24), with 82% males and 88% Australian Aboriginal. After controlling for demographic factors, regression analyses showed FASD participants were more likely than controls to be charged with reckless driving (odds ratio, OR = 4.20), breach of bail/community orders (OR = 3.19), property damage (OR = 1.84), and disorderly behaviour (OR = 1.54). Overall, our findings suggest justice-involved individuals with FASD have unique offending profiles. These results have implications for sentencing, diversionary/crime prevention programs and interventions.

Foetal alcohol spectrum disorder in Aotearoa, New Zealand: Estimates of prevalence and indications of inequity.

INTRODUCTION: Foetal alcohol spectrum disorder (FASD) is 100% caused by alcohol. The lifelong disability caused by prenatal alcohol exposure cannot be reversed. Lack of reliable national prevalence estimates of FASD is common internationally and true of Aotearoa, New Zealand. This study modelled the national prevalence of FASD and differences by ethnicity. METHODS: FASD prevalence was estimated from self-reported data on any alcohol use during pregnancy for 2012/2013 and 2018/2019, combined with risk estimates for FASD from a meta-analysis of case-ascertainment or clinic-based studies in seven other countries. A sensitivity analysis using four more recent active case ascertainment studies was performed to account for the possibility of underestimation. RESULTS: We estimated FASD prevalence in the general population to be 1.7% (95% confidence interval [CI] 1.0%; 2.7%) in the 2012/2013 year. For Maori, the prevalence was significantly higher than for Pasifika and Asian populations. In the 2018/2019 year, FASD prevalence was 1.3% (95% CI 0.9%; 1.9%). For Maori, the prevalence was significantly higher than for Pasifika and Asian populations. The sensitivity analysis estimated the prevalence of FASD in the 2018/2019 year to range between 1.1% and 3.9% and for Maori, from 1.7% to 6.3%. DISCUSSION AND CONCLUSIONS: This study used methodology from comparative risk assessments, using the best available national data. These findings are probably underestimates but indicate a disproportionate experience of FASD by Maori compared with some ethnicities. The findings support the need for policy and prevention initiatives to support alcohol-free pregnancies to reduce lifelong disability caused by prenatal alcohol exposure.

Alcohol ban during the COVID-19 pandemic lockdown: Lessons for preventing foetal alcohol spectrum disorder in South Africa.

During the two national lockdowns implemented in South Africa to curb the spread of the coronavirus disease 2019 (COVID-19) pandemic, the sale and consumption of alcoholic beverages were prohibited. There is observational evidence from the literature suggesting a drastic reduction in the emergency and trauma unit admissions in many South African hospitals and clinics with alcohol-related restrictions. This article explores the potential benefits of the restrictions placed on the sale and consumption of alcohol during the COVID-19 pandemic on preventing foetal alcohol spectrum disorder (FASD) in South Africa. Following the potential benefits of the alcohol bans, we recommended that the current South African national liquor policy and the 2012 South African government-drafted Bill for Control of Marketing of Alcoholic Beverages should be fully implemented and enforced. Furthermore, the 'best buys' by the World Health Organization (WHO) should be adapted (based on local evidence) and executed. Implementing the abovementioned policies can reduce alcohol abuse by limiting and regulating the manufacturing, distribution, advertising, sponsorship, promotion, physical availability and hours of sale of alcoholic beverages in South Africa.Contribution: This article shows that alcohol bans during the coronavirus disease 2019 (COVID-19) lockdown reduced the short-term effects of alcohol. We believe that this could be a game-changer for the prevention of FASD in South Africa and positively impact the incidence and prevalence of FASD. This piece provides evidence that policymakers, health practitioners and academics can use to continue advocating for stricter alcohol control measures in South Africa.

Facial imaging to screen for fetal alcohol spectrum disorder: A scoping review.

Facial imaging tools have rapidly advanced in recent years and show potential for use in fetal alcohol spectrum disorder (FASD) screening and diagnosis. This scoping review describes the current state of evidence regarding the use of facial imaging being as a screening tool for FASD at a community level. This review follows the guidelines for the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) extension for scoping reviews and is registered with the Open Science Framework (osf.io/e4xw6). An electronic search of five databases was conducted. The time frame was limited to the period 2006 to 2022. The search included any form of imaging of the head, neck, oral cavity, and dentition. Animal and antenatal studies were excluded, as were those using only brain imaging. The search retrieved 730 unique titles. After title, abstract, and full-text screening, 28 primary studies were included in this review. Most studies were conducted with South African participants. Imaging included 2D photographs, 3D stereophotogrammetry, 3D laser scanning, and radiographs. Various measurements and landmarks were used to discriminate FASD from non-FASD participants, which included anthropometry, face shape analysis, and facial curvatures. Methods of data processing, analysis, and modeling ranged from manual methods to fully automated systems utilizing artificial intelligence. The use of facial imaging to screen for and diagnose patients with FASD is a rapidly advancing field. Most studies in the field remain exploratory, attempting to find accurate, reliable, and consistent landmarks and measures across different populations. For community screening, none of the tools in this review in their current form completely fulfill all the identified properties of an ideal screening tool. More research and development are needed prior to advocating for the use of any tool listed and the ethical implications are yet to be fully explored.

Evaluación de las competencias lingüísticas en una adolescente con síndrome de alcoholismo fetal: Un estudio de un caso / Speech therapy assessment of language skills in a teenager with foetal alcohol syndrome: A case study

El presente estudio de caso presenta la evaluación de una paciente adolescente de 17años, adoptada en los países del Este, con discapacidad intelectual límite y problemas sensoriales. Tras la evaluación inicial se diagnosticó un trastorno del desarrollo del lenguaje de tipo fonológico-sintáctico, con comorbilidad con dislexia evolutiva e importantes problemas sensoriales. Paralelamente al diagnóstico se postuló que la adolescente sufriría síndrome de alcoholismo fetal asociado a la exposición prenatal al alcohol, tanto por su cuadro clínico como por las sospechas de su historial de adopción.(AU)

The present case study presents the speech therapy evaluation of a 17-year-old adolescent patient, adopted in an Eastern country, with borderline intellectual disability and sensory problems. After the initial evaluation, a specific lexical-syntactic language disorder was diagnosed, with comorbidity with evolutionary dyslexia and severe sensorial problems. Parallel to the diagnosis, it was postulated that the adolescent had foetal alcohol syndrome associated with prenatal alcohol exposure, both due to her clinical condition and suspicion from her adoption history. After a year of speech therapy intervention, the girl showed no improvement.(AU)

"Now, with a bit more knowledge, I understand why I'm asking those questions." midwives' perspectives on their role in the Greater Manchester health and social care partnership's programme to reduce alcohol exposed pregnancies.

OBJECTIVE: To understand midwives' perspectives regarding the effect of a programme of activities aimed at reducing alcohol exposed pregnancies at two NHS Trusts in Greater Manchester. The programme included new protocols for screening, a referral pathway for specialist support and alcohol training for midwives. DESIGN AND PARTICIPANTS: Semi-structured interviews were conducted with 6 midwives working in antenatal care at the two Trusts over the telephone and via video conferencing. A review of the literature provided insight into contemporary midwifery practice. The Theory of Planned Behaviour was used to inform the interview schedule design. Data analysis used a Framework Approach and drew on a priori themes from the literature review. FINDINGS: Participating midwives described objective screening practice using a validated tool on multiple antenatal occasions and were confident to discuss alcohol. Participants were cognisant of local and national policies and guidelines. Discussing alcohol was viewed as important and part of the midwife's role, beliefs which supported participants' intention to practice in line with new protocols. Maternal under-reporting and denial of alcohol consumption was a key barrier to providing effective care. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The professional practice of participants was more in keeping with the Chief Medical Officer's recommendations than that reported in recent research from the UK and other high-income countries. However, from this small study it is not possible to attribute this directly to the local Reducing Alcohol Exposed Pregnancies programme. Training to prepare midwives to elicit more accurately details of maternal alcohol consumption may improve the efficacy of the programme.

The neurocognitive profiles of justice involved people with foetal alcohol spectrum disorder: A systematic review.

Foetal alcohol spectrum disorder (FASD) is highly prevalent in criminal justice settings. Despite increased awareness of the neurocognitive deficits among justice-involved individuals with FASD, no systematic evaluation of the literature in the field has been conducted to date. We aimed to conduct a systematic review of the literature on the neurocognitive profiles of justice-involved individuals with FASD, by searching five key electronic databases, dissertations database, and Google scholar, up to January 2021. The findings indicate that when contrasted with comparison groups, justice-involved individuals with FASD display significant impairment in a greater number of neurocognitive domains including intellectual capacity, executive function, language, academic achievements, motor skills, and adaptive living skills. The relatively small number of the studies included in the review, along with the confounding effects of comorbidities among study participants, precludes drawing firm conclusions about the true extent and implications of neurocognitive deficits in this population. To advance the field further, there is an urgent need to conduct robust studies involving larger samples of justice-involved individuals with FASD and suitable comparison groups. Advancing knowledge in the field can have important implications for understanding of the antecedents of offending behaviour in this population, and informing strategies for early identification and intervention.

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.

Cannabidiol attenuates cognitive deficits and neuroinflammation induced by early alcohol exposure in a mice model.

Foetal alcohol spectrum disorder (FASD) is the umbrella term used to describe the physical and mental disabilities induced by alcohol exposure during development. Early alcohol exposure induces cognitive impairments resulting from damage to the central nervous system (CNS). The neuroinflammatory response accompanied by neurodegenerative mechanisms contribute to those detrimental alterations. Cannabidiol (CBD) has recently emerged as an anti-inflammatory drug that might be useful to treat several neuropsychiatric disorders. In our study, we assessed the effects of CBD on long-lasting cognitive deficits induced by early alcohol exposure. Furthermore, we analysed long-term pro-inflammatory and apoptotic markers within the prefrontal cortex and hippocampus. To model alcohol binge drinking during gestational and lactation periods, we used pregnant C57BL/6 female mice with time-limited access to 20% v/v alcohol solution. Following the prenatal and lactation alcohol exposure (PLAE), we treated the male and female offspring with CBD from post-natal day (PD) 25 until PD34, and we evaluated their cognitive performance at PD60. Our results showed that CBD treatment during peri-adolescence period ameliorates cognitive deficits observed in our FASD-like mouse model, without sex differences. Moreover, CBD restores the PLAE-induced increased levels of TNFα and IL-6 in the hippocampus. Thus, our study provides new insights for CBD as a therapeutic agent to counteract cognitive impairments and neuroinflammation caused by early alcohol exposure.

A reduction in reported alcohol use in pregnancy in Australian Aboriginal communities: a prevention campaign showing promise.

OBJECTIVE: Aboriginal leaders in remote Western Australian communities with high rates of prenatal alcohol exposure invited researchers to evaluate the community-led Marulu foetal alcohol spectrum disorder (FASD) Prevention Strategy initiated in 2010. METHODS: The proportion of women reporting alcohol use during pregnancy to midwives was compared between 2008, 2010 and 2015. Initial midwife appointments were calculated by weeks of gestation. The proportions of women reporting alcohol use by age at birth were compared. RESULTS: Alcohol use reduced significantly from 2010 (61.0%) to 2015 (31.9%) with first-trimester use reducing significantly from 2008 (45.1%) to 2015 (21.6%). Across all years, 40.8% reported alcohol use during pregnancy and 14.8% reported use in both first and third trimesters. Most women attended the midwife in the first trimester. There was a significant relationship between increased maternal age and third-trimester alcohol use. CONCLUSIONS: The reduction in reported prenatal alcohol exposure in an Aboriginal community setting during a period of prevention activities provides initial evidence for a community-led strategy that might be applicable to similar communities. Implications for public health: The reductions in alcohol use reduce the risk of children being born with FASD in an area with high prevalence, with possible resultant reductions in associated health, economic and societal costs.

Development of a referral pathway framework for foetal alcohol spectrum disorder in the Pilbara.

INTRODUCTION: This article describes the process of mapping referral pathways to develop a localised resource to enhance the journey to diagnosis, treatment and support for foetal alcohol spectrum disorder (FASD) in a regional community setting. METHODS: Over a 6-month period, a research officer engaged service providers in Port and South Hedland, Western Australia, using participatory action research methods. An iterative process included a service environment scan, interviews with service leaders and refinement of progressive drafts of the pathway through the Hedland FASD Network. A community reference group advised on cultural issues. RESULTS: Referral pathways for interagency sectors (health, education, justice) were developed. Three pathway schematics and a companion four-page referral protocol were endorsed. The pathways were disseminated to all service providers and consensus was reached to trial the pathways within existing service systems. CONCLUSION: The process of referral pathway development provided a service mapping and gapping exercise to facilitate service integration. Evaluation of the resource will be conducted using the RE-AIM framework. The referral pathways template has been adapted and trialled by health and other professionals in several sites across Australia. The model developed for FASD can be applied to other neurodevelopmental disorders.

Prenatal alcohol exposure and developmental programming of mental illness.

It is well established that high-dose alcohol consumption during pregnancy increases the risk for a plethora of adverse offspring outcomes. These include neurodevelopmental, cognitive and social deficits, as well as psychiatric illnesses, such as depression and anxiety. However, much less evidence is available on the effects of low- and early-dose alcohol exposure on mental health outcomes, regardless of the accumulating evidence that mental health outcomes should be considered in the context of the Developmental Origins of Health and Disease hypothesis. This review will discuss the evidence that indicates low-dose and early prenatal alcohol exposure can increase the risk of mental illness in offspring and discuss the mechanistic pathways that may be involved.

An antenatal alcohol service evaluation of the north-east of England and north Cumbria.

BACKGROUND: NHS England's 'Better Births' strategy aims to improve maternal and infant health outcomes. A strategic priority identified in the north-east local maternity system is to reduce alcohol consumption in pregnancy due to the documented diverse risks of harm to mother and baby, including foetal alcohol spectrum disorder. AIMS: To evaluate current alcohol prevention, screening and treatment service provision in maternity care across the region, and inform future recommendations. METHODS: A service evaluation survey was developed to systematically consult strategic stakeholders across all nine maternity trusts in the region over a 2-month period in 2018. Content analysis was employed to identify fundamental themes and inform recommendations for practice. RESULTS: High variation was reported throughout regional clinical practices, service provision and staff training. For example, a number of alcohol screening tools were identified, each with diverse thresholds for referral; reported data collection and documentation practices were multifarious, incomparable and unquantifiable; audit was rare and guidelines were primarily influenced by local commissioning agreements. DISCUSSION: Standardized patient pathways involving alcohol screening and management practices are required, and sharing best practices will facilitate referrals and support regardless of location. The implementation of these recommendations requires appropriate leadership, commissioning and training strategies.

Assessing the prevalence of alcohol consumption in early pregnancy using blood biomarker analysis: a consistent pattern across north-east England?

BACKGROUND: We previously investigated the prevalence of alcohol consumption in early pregnancy in Northumbria Healthcare NHS Foundation Trust, a locality of north-east England. The prevalence was 1.4% based on blood sample biomarker analysis using carbohydrate deficient transferrin (CDT) and 3.5% for gamma-glutamyltransferase (GGT). AIMS: To supplement this research by investigating the prevalence of alcohol use using identical methods in a different locality of the same region. METHODS: Six-hundred random blood samples taken at the antenatal booking appointment were anonymously analysed for the presence of CDT, a validated marker of chronic alcohol exposure (normalizing 2-3 weeks from abstinence) and GGT, a liver enzyme elevated for up to 8 weeks after alcohol exposure. RESULTS: The North Tees and Hartlepool NHS Foundation Trust data revealed a CDT prevalence rate of 1.7% (95% CI: 0.7-2.9) and GGT prevalence rate of 4.2% (95% CI: 2.6-5.9). However, these measures are not sensitive to low levels of alcohol; and no overlapping cases were identified or a significant correlation demonstrated between CDT or GGT. DISCUSSION: These data support our earlier work. Prevalence rates according to CDT and GGT analysis were similar in both areas, suggesting similar patterns of sustained alcohol use in pregnancy across the region.

Health advice on alcohol consumption in pregnant women in Seville (Spain).

OBJECTIVE: To analyse to what extent pregnant women remembered having received health advice regarding alcohol consumption during pregnancy, what the message they perceived was and whether there is social inequality in this regard. METHOD: A cross-sectional descriptive study was performed with a sample of 426 pregnant women (in their 20th week of pregnancy) receiving care in the outpatient clinics of a university hospital in a southern Spanish city (Seville). The data were collected through face-to-face structured interviews carried out by trained health professionals. RESULTS: 43% of the interviewed women stated that they had not received any health advice in this regard. Only 43.5% of the sample remembered having received the correct message (not to consume any alcohol at all during pregnancy) from their midwife, 25% from their obstetrician and 20.3% from their general practitioner. The women with a low educational level were those who least declared having received health advice on the issue. CONCLUSION: The recommended health advice to avoid alcohol consumption during pregnancy does not effectively reach a large proportion of pregnant women. Developing institutional programmes which help healthcare professionals to carry out effective preventive activities of foetal alcohol spectrum disorder is needed.

Overcoming the challenges of caring for a child with foetal alcohol spectrum disorder: a Pilbara community perspective.

Introduction Foetal alcohol spectrum disorder (FASD) is a neurodevelopmental impairment that may result in individuals experiencing poor development, cognitive issues and disruptive behaviours. In Australia, the prevalence of FASD is unknown; however, two studies have revealed the prevalence of FASD in high risk populations in Western Australia. Individuals with FASD may experience higher rates of negative outcomes including poor school performance, involvement with the justice system and incarceration, substance use and are at risk of being placed in out-of-home care. Caregivers of children with FASD can experience challenges and high levels of stress due to the disruptive behaviours displayed by many children diagnosed with FASD. Whilst experiences of caregivers raising children with FASD have been documented globally, little is known about the experiences of caregivers in a remote Australian context, particularly from an Australian Aboriginal perspective. This study aimed to investigate the experiences of caregivers in a remote Australian context. The findings will be valuable to inform programs at the family, community and broader policy levels that can help enhance children's development and wellbeing. METHODS: Participants (n=7) in this qualitative study were recruited through a FASD diagnostic clinic and family support organisation in the Port Hedland region of Western Australia. Eligible participants were previous or current caregivers of children with a FASD diagnosis or risk of FASD and provided informed consent before participating in semi-structured interviews using a phenomenological approach. The interviews were 30-60 minutes in duration and were audio-recorded and transcribed verbatim using NVivo 11 computer software, with all identifying information removed. RESULTS: The caregivers provided rich, descriptive narratives revealing the challenges and stress they experienced when they first started caring for their child with FASD. Caregivers articulated how they developed and adapted strategies through trial and error that enabled them to better manage disruptive behaviours and maintain a stable, calm environment. A thematic analysis revealed four major themes: the importance of routine and structure for the child and family, the importance of family support, the benefits of peer support groups and various social issues impacting children's development. Maintaining routine and structure had helped many caregivers mitigate stress and reduce disruptive behaviours, and family support allowed caregivers some respite whilst ensuring children remained connected to their biological families and culture. The caregivers also shared that peer support groups would be beneficial to share stories and strategies with others experiencing similar circumstances. Broader societal issues requiring attention at the community level were discussed, in addition to caregivers having awareness of the complexities impacting the children's biological families. CONCLUSION: The caregivers in this study have gained valuable knowledge and wisdom through caring for a child with FASD that can benefit health professionals and the broader community. Whilst the caregivers in this study have overcome challenges through developing and adapting their own strategies, support services providing tailored programs for caregivers when they first start caring for a child with FASD would be beneficial. Furthermore, formal respite was not utilised by the caregivers in this study due to safety issues, inconsistent parenting and interrupted routines, therefore investigation into training respite caregivers in the area of FASD would be beneficial. Furthermore, respite services should consider provisions to include extended families and kinship relationships in a formal context to enable ongoing cultural and family connection, consistent parenting strategies and routines.