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PURPOSE: To describe ophthalmic findings in an Indigenous paediatric population and the associations between fetal alcohol spectrum disorder (FASD), prenatal alcohol exposure (PAE), and eye anomalies. METHODS: Medical records were reviewed for eye problems, and eye assessments were conducted by an orthoptist or ophthalmologist in the Lililwan Project cohort, which comprised 108 (81%) of all children born between 2002 and 2003, and residing in the remote Fitzroy Valley, Western Australia in 2010. Values from ophthalmic assessments and prevalence of abnormalities were presented for the total cohort and stratified by group: FASD; PAE (no FASD); and No PAE. RESULTS: Of children, 55% had PAE and 19% FASD. Most (98%) had normal vision; 15.6% had keratometry cylinder values indicating astigmatism and potential for improved vision with glasses. Strabismus (22.3%), short palpebral fissure length (PFL; 21.3%), upslanting palpebral fissures (12.0%), follicular trachomatous inflammation (6.9%), abnormal slit lamp assessments (6.7%), retinal tortuosity (6.7%), and blepharoptosis (5.6%) were identified. Strabismus and trachoma rates were higher than in the general child population. Ophthalmic findings were similar between groups except for prevalence of short PFL (FASD > No PAE; p = 0.003); abnormal keratometry cylinder values (FASD [29.4%] and PAE (no FASD) [20.0%] > No PAE [5.3%]; p = 0.031) and blepharoptosis (FASD [9.5%] > other groups [0%]; p = 0.040). CONCLUSION: Despite the small sample, some eye abnormalities were higher in children with PAE and/or FASD. Access to eye services or assessment of vision and structural eye anomalies is essential for Indigenous children, particularly those with PAE or FASD to allow early effective treatment.
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In Australia, there is a significant gap between health outcomes in Indigenous and non-Indigenous children, which may relate to inequity in health service provision, particularly in remote areas. The aim was to conduct a scoping review to identify publications in the academic and grey literature and describe 1) Existing health services for Indigenous children in remote Australia and service use, 2) Workforce challenges in remote settings, 3) Characteristics of an effective health service, and 4) Models of care and solutions. Electronic databases of medical/health literature were searched (Jan 1990 to May 2021). Grey literature was identified through investigation of websites, including of local, state and national health departments. Identified papers (n = 1775) were screened and duplicates removed. Information was extracted and summarised from 116 papers that met review inclusion criteria (70 from electronic medical databases and 45 from the grey literature). This review identified that existing services struggle to meet demand. Barriers to effective child health service delivery in remote Australia include availability of trained staff, limited services, and difficult access. Aboriginal and Community Controlled Health Organisations are effective and should receive increased support including increased training and remuneration for Aboriginal Health Workers. Continuous quality assessment of existing and future programs will improve quality; as will measures that reflect aboriginal ways of knowing and being, that go beyond traditional Key Performance Indicators. Best practice models for service delivery have community leadership and collaboration. Increased resources with a focus on primary prevention and health promotion are essential.
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Background. Aboriginal leaders invited us to examine the frequency and reasons for emergency department (ED) presentations by children in remote Western Australia, where Prenatal Alcohol Exposure (PAE) is common. Methods. ED presentations (2007-11 inclusive) were examined for all children born in the Fitzroy Valley in 2002-03. Results. ED data for 127/134 (94.7%) children (95% Aboriginal) showed 1058 presentations over 5-years. Most (81%) had at least 1 presentation (median 9.0, range 1-50). Common presentations included: screening/follow-up/social reasons (16.0%), injury (15.1%), diseases of the ear (14.9%), skin (13.8%), respiratory tract (13.4%), and infectious and parasitic diseases (9.8%). PAE and higher presentations rates were associated. Commonly associated socio-economic factors were household over-crowding, financial and food insecurity. Conclusion. Children in very remote Fitzroy Crossing communities have high rates of preventable ED presentations, especially those with PAE. Support for culturally appropriate preventative programs and improved access to primary health services need to be provided in remote Australia.
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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.
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Consumo de Bebidas Alcohólicas/epidemiología , Trastornos del Espectro Alcohólico Fetal/prevención & control , Nativos de Hawái y Otras Islas del Pacífico/estadística & datos numéricos , Efectos Tardíos de la Exposición Prenatal/prevención & control , Adulto , Consumo de Bebidas Alcohólicas/efectos adversos , Consumo de Bebidas Alcohólicas/etnología , Australia/epidemiología , Femenino , Trastornos del Espectro Alcohólico Fetal/etnología , Humanos , Embarazo , Primer Trimestre del Embarazo , Tercer Trimestre del Embarazo , Efectos Tardíos de la Exposición Prenatal/etnología , Prevalencia , Características de la ResidenciaRESUMEN
BACKGROUND: Despite a national focus on closing the gap between Aboriginal and non-Aboriginal child health outcomes in Australia, there remain significant challenges, including provision of health services in very remote communities. We aimed to identify and map child health services in the very remote Fitzroy Valley, West Kimberley, and document barriers to effective service delivery. METHODS: Identification and review of all regional child health services and staffing in 2013. Verification of data by interview with senior managers and staff of key providers in the Western Australian Country Health Service, Kimberley Population Health Unit, Nindilingarri Cultural Health Services and non-government providers. RESULTS: We identified no document providing a comprehensive overview of child health services in the Fitzroy Valley. There were inadequate numbers of health professionals, facilities and accommodation; high staff turnover; and limited capacity and experience of local health professionals. Funding and administrative arrangements were complex and services poorly coordinated and sometimes duplicated. The large geographic area, distances, extreme climate and lack of public and private transport challenge service delivery. The need to attend to acute illness acts to deprioritise crucial primary and preventative health care and capacity for dealing with chronic, complex disorders. Some services lack cultural safety and there is a critical shortage of Aboriginal Health Workers (AHW). CONCLUSIONS: Services are fragmented and variable and would benefit from a coordinated approach between government, community-controlled agencies, health and education sectors. A unifying model of care with emphasis on capacity-building in Aboriginal community members and training and support for AHW and other health professionals is required but must be developed in consultation with communities. Innovative diagnostic and care models are needed to address these challenges, which are applicable to many remote Australian settings outside the Fitzroy Valley, as well as other countries globally. Our results will inform future health service planning and strategies to attract and retain health professionals to work in these demanding settings. A prospective audit of child health services is now needed to inform improved planning of child health services with a focus on identifying service gaps and training needs and better coordinating existing services to improve efficiency and potentially also efficacy.
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Servicios de Salud del Niño/organización & administración , Servicios de Salud del Indígena/organización & administración , Servicios de Salud Rural/organización & administración , Niño , Investigación sobre Servicios de Salud , Humanos , Australia OccidentalRESUMEN
BACKGROUND: The consent and community engagement process for research with Indigenous communities is rarely evaluated. Research protocols are not always collaborative, inclusive or culturally respectful. If participants do not trust or understand the research, selection bias may occur in recruitment, affecting study results potentially denying participants the opportunity to provide more knowledge and greater understanding about their community. Poorly informed consent can also harm the individual participant and the community as a whole. METHODS: Invited by local Aboriginal community leaders of the Fitzroy Valley, the Kimberley, Western Australia, The Picture Talk project explores the consent process for research. Focus groups of Aboriginal community members were conducted to establish preferences for methods of seeking individual consent. Transcripts were analysed through NVivo10 Qualitative software using grounded theory with inductive and deductive coding. Themes were synthesised with quotes highlighted. RESULTS: Focus groups with Aboriginal community members (n = 6 focus groups of 3-7 participants) were facilitated by a Community Navigator as a cultural guide and interpreter and a researcher. Participants were recruited from all main language groups of the Fitzroy Valley - Gooniyandi, Walmajarri, Wangkatjungka, Bunuba and Nikinya. Participants were aged ≥18 years, with 5 female groups and one male group. Themes identified include: Reputation and trust is essential; The Community Navigator is key; Pictures give the words meaning - milli milli versus Pictures; Achieving consensus in circles; Signing for consent; and Research is needed in the Valley. CONCLUSION: Aboriginal communities of the Fitzroy Valley recommend that researchers collaborate with local leaders, develop trust and foster a good reputation in the community prior to research. Local Aboriginal researchers should be employed to provide cultural guidance throughout the research process and interpret local languages especially for elders. Pictures are preferred to written text to explain research information and most prefer to sign for consent. The Fitzroy Valley welcomes research when collaborative and for the benefit of the community. Future research could include exploring how to support young people, promote health screening and improve understanding of medical knowledge.
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Investigación Biomédica/ética , Asistencia Sanitaria Culturalmente Competente/ética , Educación en Salud , Servicios de Salud del Indígena/ética , Consentimiento Informado/ética , Nativos de Hawái y Otras Islas del Pacífico , Adulto , Comunicación , Asistencia Sanitaria Culturalmente Competente/normas , Atención a la Salud , Femenino , Grupos Focales , Educación en Salud/ética , Educación en Salud/organización & administración , Conocimientos, Actitudes y Práctica en Salud , Servicios de Salud del Indígena/normas , Humanos , Entrevistas como Asunto , Masculino , Nativos de Hawái y Otras Islas del Pacífico/educación , Nativos de Hawái y Otras Islas del Pacífico/psicología , Investigación Cualitativa , Literatura de Revisión como Asunto , Australia OccidentalRESUMEN
INTRODUCTION: Research with Indigenous populations is not always designed with cultural sensitivity. Few publications evaluate or describe in detail seeking consent for research with Indigenous participants. When potential participants are not engaged in a culturally respectful manner, participation rates and research quality can be adversely affected. It is unethical to proceed with research without truly informed consent. METHODS AND ANALYSIS: We describe a culturally appropriate research protocol that is invited by Aboriginal communities of the Fitzroy Valley in Western Australia. The Picture Talk Project is a research partnership with local Aboriginal leaders who are also chief investigators. We will interview Aboriginal leaders about research, community engagement and the consent process and hold focus groups with Aboriginal community members about individual consent. Cultural protocols will be applied to recruit and conduct research with participants. Transcripts will be analysed using NVivo10 qualitative software and themes synthesised to highlight the key issues raised by the community about the research process. This protocol will guide future research with the Aboriginal communities of the Fitzroy Valley and may inform the approach to research with other Indigenous communities of Australia or the world. It must be noted that no community is the same and all research requires local consultation and input. To conduct culturally sensitive research, respected local people from the community who have knowledge of cultural protocol and language are engaged to guide each step of the research process from the project design to the delivery of results. ETHICS AND DISSEMINATION: Ethics approval was granted by the University of Sydney Human Research Ethics Committee (No. 2012/348, reference:14760), the Western Australia Country Health Service Ethics Committee (No. 2012:15), the Western Australian Aboriginal Health Ethics Committee and reviewed by the Kimberley Aboriginal Health Planning Forum Research Sub-Committee (No. 2012-008). Results will be disseminated through peer review articles, a local Fitzroy Valley report and conference presentations.
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Comunicación , Asistencia Sanitaria Culturalmente Competente , Servicios de Salud del Indígena , Consentimiento Informado , Nativos de Hawái y Otras Islas del Pacífico , Participación del Paciente , Investigación Biomédica , Femenino , Humanos , Liderazgo , Masculino , Investigación Cualitativa , Proyectos de Investigación , Australia OccidentalRESUMEN
BACKGROUND: Many children in the remote Fitzroy Valley region of Western Australia have prenatal alcohol exposure (PAE). Individuals with PAE can have neurodevelopmental impairments and be diagnosed with one of several types of Fetal Alcohol Spectrum Disorder (FASD). Fine motor skills can be impaired by PAE, but no studies have developed a comprehensive profile of fine motor skills in a population-based cohort of children with FASD. We aimed to develop a comprehensive profile of fine motor skills in a cohort of Western Australian children; determine whether these differed in children with PAE or FASD; and establish the prevalence of impairment. METHODS: Children (n = 108, 7 to 9 years) were participants in a population-prevalence study of FASD in Western Australia. Fine motor skills were assessed using the Bruininks-Oseretsky Test of Motor Proficiency, which provided a Fine Motor Composite score, and evaluated Fine Manual Control (Fine Motor Precision; Fine Motor Integration) and Manual Coordination (Manual Dexterity; Upper-Limb Coordination). Descriptive statistics were reported for the overall cohort; and comparisons made between children with and without PAE and/or FASD. The prevalence of severe (≤ 2nd percentile) and moderate (≤16th percentile) impairments was determined. RESULTS: Overall, Fine Motor Composite scores were 'average' (M = 48.6 ± 7.4), as were Manual Coordination (M = 55.7 ± 7.9) and Fine Manual Control scores (M = 42.5 ± 6.2). Children with FASD had significantly lower Fine Motor Composite (M = 45.2 ± 7.7 p = 0.046) and Manual Coordination scores (M = 51.8 ± 7.3, p = 0.027) than children without PAE (Fine Motor Composite M = 49.8 ± 7.2; Manual Coordination M = 57.0 ± 7.7). Few children had severe impairment, but rates of moderate impairment were very high. CONCLUSIONS: Different types of fine motor skills should be evaluated in children with PAE or FASD. The high prevalence of fine motor impairment in our cohort, even in children without PAE, highlights the need for therapeutic intervention for many children in remote communities.
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Trastornos del Espectro Alcohólico Fetal/fisiopatología , Trastornos de la Destreza Motora/etiología , Destreza Motora , Efectos Tardíos de la Exposición Prenatal/fisiopatología , Niño , Estudios de Cohortes , Femenino , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Trastornos del Espectro Alcohólico Fetal/epidemiología , Humanos , Masculino , Trastornos de la Destreza Motora/diagnóstico , Trastornos de la Destreza Motora/epidemiología , Pruebas Neuropsicológicas , Embarazo , Efectos Tardíos de la Exposición Prenatal/diagnóstico , Efectos Tardíos de la Exposición Prenatal/epidemiología , Efectos Tardíos de la Exposición Prenatal/etiología , Prevalencia , Desempeño Psicomotor , Australia Occidental/epidemiologíaRESUMEN
BACKGROUND: We analysed hospital admissions of a predominantly Aboriginal cohort of children in the remote Fitzroy Valley in Western Australia during the first 7 years of life. METHODS: All children born between January 1, 2002 and December 31, 2003 and living in the Fitzroy Valley in 2009-2010 were eligible to participate in the Lililwan Project. Of 134 eligible children, 127 (95%) completed Stage 1 (interviews of caregivers and medical record review) in 2011 and comprised our cohort. Lifetime (0-7 years) hospital admission data were available and included the dates, and reasons for admission, and comorbidities. Conditions were coded using ICD-10-AM discharge codes. RESULTS: Of the 127 children, 95.3% were Indigenous and 52.8% male. There were 314 admissions for 424 conditions in 89 (70.0%) of 127 children. The 89 children admitted had a median of five admissions (range 1-12). Hospitalization rates were similar for both genders (p = 0.4). Of the admissions, 108 (38.6%) were for 56 infants aged <12 months (median = 2.5, range = 1-8). Twelve of these admissions were in neonates (aged 0-28 days). Primary reasons for admission (0-7 years) were infections of the lower respiratory tract (27.4%), gastrointestinal system (22.7%), and upper respiratory tract (11.4%), injury (7.0%), and failure to thrive (5.4%). Comorbidities, particularly upper respiratory tract infections (18.1%), failure to thrive (13.6%), and anaemia (12.7%), were common. In infancy, primary cause for admission were infections of the lower respiratory tract (40.8%), gastrointestinal (25.9%) and upper respiratory tract (9.3%). Comorbidities included upper respiratory tract infections (33.3%), failure to thrive (18.5%) and anaemia (18.5%). CONCLUSION: In the Fitzroy Valley 70.0% of children were hospitalised at least once before age 7 years and over one third of admissions were in infants. Infections were the most common reason for admission in all age groups but comorbidities were common and may contribute to need for admission. Many hospitalizations were feasibly preventable. High admission rates reflect disadvantage, remote location and limited access to primary healthcare and outpatient services. Ongoing public health prevention initiatives including breast feeding, vaccination, healthy diet, hygiene and housing improvements are crucial, as is training of Aboriginal Health Workers to increase services in remote communities.
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Salud Infantil/etnología , Disparidades en el Estado de Salud , Hospitalización/estadística & datos numéricos , Nativos de Hawái y Otras Islas del Pacífico , Salud Rural/etnología , Niño , Preescolar , Comorbilidad , Femenino , Accesibilidad a los Servicios de Salud , Humanos , Lactante , Recién Nacido , Masculino , Estudios Retrospectivos , Australia Occidental/epidemiologíaRESUMEN
OBJECTIVE: Aboriginal leaders concerned about high rates of Fetal Alcohol Spectrum Disorder (FASD) in the Fitzroy Valley, remote north-western Australia, introduced restrictions on access to take-away full-strength alcohol. Following this, Aboriginal leaders engaged strategic partners in a broader strategy to address FASD in the region. The aim of this study was to develop and implement a community-led, researcher-supported, FASD strategy. METHODS: A review of literature focusing on community-led FASD strategies identified key components that informed the Marulu FASD strategy. These included strategy ownership, leadership, and governance by participating communities, and a research framework. RESULTS: Community meetings and workshops led to the development of The Marulu FASD Strategy (2008). Feasibility and community consent to conduct a FASD prevalence study (the Lililwan Project) was confirmed, and implementation was progressed (2010-2013). Concurrent FASD prevention activities were conducted. In 2012, the Marulu FASD Unit was established within a local Aboriginal organisation to sustain and coordinate ongoing strategy activities. CONCLUSIONS: Community control of public health initiatives can be achieved when Aboriginal communities prioritise issues of significant concern, and engage strategic partners to overcome them. Implications for public health: The Marulu Strategy forms a template for action to address FASD and other public health issues in Aboriginal communities in Australia and internationally.
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Trastornos del Espectro Alcohólico Fetal/etnología , Trastornos del Espectro Alcohólico Fetal/prevención & control , Nativos de Hawái y Otras Islas del Pacífico , Consumo de Bebidas Alcohólicas/epidemiología , Consumo de Bebidas Alcohólicas/etnología , Australia/epidemiología , Estudios Transversales , Femenino , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Humanos , Masculino , EmbarazoRESUMEN
OBJECTIVE: To document behavior in children residing in very remote Western Australian communities as rated by parent/caregivers and teachers. We hypothesized that children with fetal alcohol spectrum disorders (FASD) would have higher rates of problematic behavior than children without FASD. METHODS: The Child Behavior Checklist (CBCL; n = 97), and Teacher Report Form (TRF; n = 106) were used in this population-based study. Raw scores, proportions scoring within "Normal/Borderline/Clinical" ranges, and frequencies of Critical items were determined. Mann-Whitney U and χ tests were used for between-group comparisons. RESULTS: Children were aged from 7.5 to 9.6 years, and 19% had FASD. Academic performance was commonly rated in the "Borderline/Clinical" range (73%). Teacher-rated scores were poorer in the FASD group on 15 scales encompassing total and internalizing problems, adaptive function, academic performance, attention, withdrawn/depressed, social problems, posttraumatic stress, thought problems, and sluggish cognitive tempo (p < .05). More children in the FASD group had scores in the "Borderline/Clinical" range on 11 TRF scales (p < .05). "Physically attacks people" was the most prevalent Critical item endorsed by teachers for the total cohort (22%). "Talks about killing self" was endorsed by teachers more often in the FASD group (14%) than the Non-FASD group (1%; p = .03). There were no significant differences between groups in parent-reported CBCL scores after adjustment for multiple comparison testing. CONCLUSION: This study demonstrates that children with FASD have more teacher-reported behavioral impairment than children without FASD. In remote Australian communities, academic performance is poor.
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Rendimiento Académico/estadística & datos numéricos , Trastornos de la Conducta Infantil/fisiopatología , Trastornos del Espectro Alcohólico Fetal/fisiopatología , Población Rural/estadística & datos numéricos , Australia/epidemiología , Niño , Trastornos de la Conducta Infantil/epidemiología , Trastornos de la Conducta Infantil/etiología , Femenino , Trastornos del Espectro Alcohólico Fetal/epidemiología , Humanos , MasculinoRESUMEN
BACKGROUND: Despite multiple risk factors for neurodevelopmental vulnerability, few studies have assessed neurodevelopmental performance of Australian Aboriginal children. An important risk factor for neurodevelopmental vulnerability is prenatal alcohol exposure (PAE), which places children at risk for Fetal Alcohol Spectrum Disorder (FASD). AIMS: This study assesses neurodevelopment outcomes in a population of Australian Aboriginal children with and without PAE. METHODS AND PROCEDURES: Children born in 2002/2003, and living in the Fitzroy Valley, Western Australia between April 2010 and November 2011, were eligible (N=134). Sociodemographic and antenatal data, including PAE, were collected by interview with 127/134 (95%) consenting parents/caregivers. Maternal/child medical records were reviewed. Neurodevelopment was assessed by clinicians blinded to PAE in 108/134 (81%) children and diagnoses on the FASD spectrum were assigned. OUTCOMES AND RESULTS: Neurodevelopmental disorder was documented in 34/108 children (314.8 per 1000). Any diagnosis on the FASD spectrum was made in 21/108 (194.4 per 1000) children (95% CI=131.0-279.0). CONCLUSIONS AND IMPLICATIONS: Neurodevelopmental impairment with or without PAE is highly prevalent among children in the Fitzroy Valley. Rates of diagnoses on the FASD spectrum are among the highest worldwide. Early intervention services are needed to support developmentally vulnerable children in remote communities.
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Desarrollo Infantil , Trastornos del Espectro Alcohólico Fetal , Niño , Demografía , Femenino , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Trastornos del Espectro Alcohólico Fetal/etnología , Humanos , Masculino , Nativos de Hawái y Otras Islas del Pacífico/estadística & datos numéricos , Evaluación de Necesidades , Sistema Nervioso/crecimiento & desarrollo , Examen Neurológico/métodos , Examen Neurológico/estadística & datos numéricos , Embarazo , Efectos Tardíos de la Exposición Prenatal/diagnóstico , Efectos Tardíos de la Exposición Prenatal/epidemiología , Efectos Tardíos de la Exposición Prenatal/prevención & control , Factores Socioeconómicos , Australia Occidental/epidemiologíaRESUMEN
BACKGROUND/AIM: Few studies have examined graphomotor skills in children with prenatal alcohol exposure (PAE) or fetal alcohol spectrum disorder (FASD). METHODS: Graphomotor skills were assessed in 108 predominantly Australian Aboriginal children aged 7.5-9.6 years in remote Western Australia using clinical observations (pencil grasp; writing pressure) and standardised assessment tools (the Evaluation Tool of Children's Handwriting; and the Miller Function and Participation Scales - The Draw-a-Kid Game). Skills were compared between children (i) without PAE, (ii) PAE but not FASD and (iii) FASD. RESULTS: Most children used a transitional pencil grasp and exerted heavy handwriting pressure (83.3% and 30.6% of the cohort). The percentage of letters (M = 62.9%) and words (M = 73.3%) written legibly was low. Children with FASD were more likely than children without PAE to use a cross-thumb grasp (P = 0.027), apply heavy writing pressure (P = 0.036), be unable to write a sentence (P = 0.041) and show poorer word legibility (P = 0.041). There were no significant differences between groups for drawing outcomes, although some children with FASD drew pictures that appeared delayed for their age. There were no significant differences between children without PAE and those with PAE but who were not diagnosed with FASD. CONCLUSIONS: Overall, graphomotor skills were poor in this cohort, but children with FASD performed significantly worse than children without PAE. Findings suggest the need for improved occupational therapy services for children in remote regions and evaluation of graphomotor skills in children with PAE.
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Trastornos del Espectro Alcohólico Fetal/fisiopatología , Escritura Manual , Destreza Motora/fisiología , Nativos de Hawái y Otras Islas del Pacífico , Efectos Tardíos de la Exposición Prenatal/fisiopatología , Niño , Femenino , Trastornos del Espectro Alcohólico Fetal/etnología , Humanos , Embarazo , Efectos Tardíos de la Exposición Prenatal/etnología , Australia Occidental/epidemiologíaRESUMEN
PURPOSE: To examine the three facial features of fetal alcohol syndrome (FAS) in a cohort of Australian Aboriginal children from two-dimensional digital facial photographs to: (1) assess intrarater and inter-rater reliability; (2) identify the racial norms with the best fit for this population; and (3) assess agreement with clinician direct measures. METHODS: Photographs and clinical data for 106 Aboriginal children (aged 7.4-9.6 years) were sourced from the Lililwan Project. Fifty-eight per cent had a confirmed prenatal alcohol exposure and 13 (12%) met the Canadian 2005 criteria for FAS/partial FAS. Photographs were analysed using the FAS Facial Photographic Analysis Software to generate the mean PFL three-point ABC-Score, five-point lip and philtrum ranks and four-point face rank in accordance with the 4-Digit Diagnostic Code. Intrarater and inter-rater reliability of digital ratings was examined in two assessors. Caucasian or African American racial norms for PFL and lip thickness were assessed for best fit; and agreement between digital and direct measurement methods was assessed. RESULTS: Reliability of digital measures was substantial within (kappa: 0.70-1.00) and between assessors (kappa: 0.64-0.89). Clinician and digital ratings showed moderate agreement (kappa: 0.47-0.58). Caucasian PFL norms and the African American Lip-Philtrum Guide 2 provided the best fit for this cohort. CONCLUSION: In an Aboriginal cohort with a high rate of FAS, assessment of facial dysmorphology using digital methods showed substantial inter- and intrarater reliability. Digital measurement of features has high reliability and until data are available from a larger population of Aboriginal children, the African American Lip-Philtrum Guide 2 and Caucasian (Strömland) PFL norms provide the best fit for Australian Aboriginal children.
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BACKGROUND: When conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations. METHODS: A systematic literature search was conducted for articles that describe or evaluate the process of seeking informed consent for research with Indigenous participants. Guidelines for ethical research and for seeking consent with Indigenous people are also included in our review. RESULTS: Of 1447 articles found 1391 were excluded (duplicates, irrelevant, not in English); 56 were relevant and included. Articles were categorised into original research that evaluated the consent process (n = 5) or publications detailing the process of seeking consent (n = 13) and guidelines for ethical research (n = 38). Guidelines were categorised into international (n = 8); national (n = 20) and state/regional/local guidelines (n = 10). In five studies based in Australia, Canada and The United States of America the consent process with Indigenous people was objectively evaluated. In 13 other studies interpreters, voice recording, videos, pictures, flipcharts and "plain language" forms were used to assist in seeking consent but these processes were not evaluated. Some Indigenous organisations provide examples of community-designed resources for seeking consent and describe methods of community engagement, but none are evaluated. International, national and local ethical guidelines stress the importance of upholding Indigenous values but fail to specify methods for engaging communities or obtaining individual consent. In the 'Grey literature' concerns about the consent process are identified but no solutions are offered. CONCLUSION: Consultation with Indigenous communities is needed to determine how consent should be sought from the community and the individual, and how to evaluate this process.
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Ética en Investigación , Indígenas Norteamericanos , Consentimiento Informado/ética , Nativos de Hawái y Otras Islas del Pacífico , Investigación , Características de la Residencia , Australia , Canadá , Cultura , Humanos , Estados UnidosRESUMEN
AIM: This study aimed to determine the gross motor (GM) performance of Aboriginal children living in remote Australia. The relationship between GM skills, prenatal alcohol exposure (PAE) and fetal alcohol spectrum disorders (FASD) was explored. METHODS: A population-based observation study was conducted in 2011 to assess motor performance in children living in the Fitzroy Valley, Western Australia, using the Bruininks-Oseretsky Test of Motor Proficiency (BOT-2). BOT-2 data were retrospectively analysed using recently developed software enabling separation of fine and GM outcomes. RESULTS: A total of 108 children (98.1% Aboriginal; 53% male, mean age: 8.7 years) were assessed. Half (52.2%) were exposed to at least 'risky' levels of PAE, and 21 (19%) were diagnosed with an FASD. The mean GM composite score of the cohort (47.0 ± 8.4) approached the BOT-2 normative mean (50.0 ± 10) and was similar between children with and without PAE (P = 0.27). This mean score, however, was significantly lower in children with FASD than without (mean difference: -5.5 ± 20.6; P = 0.006). Compared with children without FASD, children with FASD had significant impairment in subtests for running speed and agility (mean difference ± standard deviation (SD): -2.4 ± 8.1; P = 0.003) and strength (mean difference ± SD:-2.8 ± 9.9; P = 0.004) and (ii) a higher proportion than expected had overall GM impairment (≤2 SD: 9.5%; ≤1 SD: 23.8%). In groups with PAE, no PAE and no FASD, GM function approached expected population norms. CONCLUSIONS: A higher than expected proportion of children with FASD had GM scores that indicated impairment and need for therapy. Evaluation of GM performance should routinely be included in FASD assessment to determine strategies to optimise child development.
Asunto(s)
Desarrollo Infantil/efectos de los fármacos , Trastornos del Espectro Alcohólico Fetal/fisiopatología , Destreza Motora/efectos de los fármacos , Efectos Tardíos de la Exposición Prenatal/fisiopatología , Niño , Pruebas Diagnósticas de Rutina , Femenino , Humanos , Masculino , Nativos de Hawái y Otras Islas del Pacífico , Embarazo , Estudios Retrospectivos , Población RuralRESUMEN
BACKGROUND: Visual-motor integration (VMI) skills are essential for successful academic performance, but to date no studies have assessed these skills in a population-based cohort of Australian Aboriginal children who, like many children in other remote, disadvantaged communities, consistently underperform academically. Furthermore, many children in remote areas of Australia have prenatal alcohol exposure (PAE) and Fetal Alcohol Spectrum Disorder (FASD), which are often associated with VMI deficits. METHODS: VMI, visual perception, and fine motor coordination were assessed using The Beery-Buktenica Developmental Test of Visual-Motor Integration, including its associated subtests of Visual Perception and Fine Motor Coordination, in a cohort of predominantly Australian Aboriginal children (7.5-9.6 years, n=108) in remote Western Australia to explore whether PAE adversely affected test performance. Cohort results were reported, and comparisons made between children i) without PAE; ii) with PAE (no FASD); and iii) FASD. The prevalence of moderate (≤16th percentile) and severe (≤2nd percentile) impairment was established. RESULTS: Mean VMI scores were 'below average' (M=87.8±9.6), and visual perception scores were 'average' (M=97.6±12.5), with no differences between groups. Few children had severe VMI impairment (1.9%), but moderate impairment rates were high (47.2%). Children with FASD had significantly lower fine motor coordination scores and higher moderate impairment rates (M=87.9±12.5; 66.7%) than children without PAE (M=95.1±10.7; 23.3%) and PAE (no FASD) (M=96.1±10.9; 15.4%). CONCLUSIONS: Aboriginal children living in remote Western Australia have poor VMI skills regardless of PAE or FASD. Children with FASD additionally had fine motor coordination problems. VMI and fine motor coordination should be assessed in children with PAE, and included in FASD diagnostic assessments.
Asunto(s)
Trastornos del Espectro Alcohólico Fetal/fisiopatología , Trastornos de la Destreza Motora/fisiopatología , Destreza Motora , Efectos Tardíos de la Exposición Prenatal/fisiopatología , Desempeño Psicomotor , Percepción Visual , Consumo de Bebidas Alcohólicas/epidemiología , Depresores del Sistema Nervioso Central , Niño , Estudios de Cohortes , Etanol , Femenino , Trastornos del Espectro Alcohólico Fetal/epidemiología , Humanos , Exposición Materna/estadística & datos numéricos , Trastornos de la Destreza Motora/epidemiología , Nativos de Hawái y Otras Islas del Pacífico/estadística & datos numéricos , Embarazo , Efectos Tardíos de la Exposición Prenatal/epidemiología , Prevalencia , Australia Occidental/epidemiologíaRESUMEN
AIM: To identify soft neurological signs (SNS) in a population-based study of children living in remote Aboriginal communities in the Fitzroy Valley, Western Australia, born between 2002 and 2003 and explore the relationship between SNS, prenatal alcohol exposure (PAE), and fetal alcohol spectrum disorders (FASD). METHOD: The presence of SNS was assessed using the Quick Neurological Screening Test, 2nd edition (QNST-2), which has a total maximum score of 140. Higher scores indicated more SNS. 'Severe discrepancy' was defined as scores less than or equal to the fifth centile while 'moderate discrepancy' represented scores from the sixth to the 24th centile. Children were assigned FASD diagnoses using modified Canadian FASD diagnostic guidelines. RESULTS: A total of 108 of 134 (80.6%) eligible children (mean age 8y 9mo, SD=6mo, 53% male) were assessed. The median QNST-2 Total Score for all participants was within the normal category (19.0, range 4-66). However, the median QNST-2 Total Score was higher in children with than without (1) PAE (r=0.2, p=0.045) and (2) FASD (r=0.3, p=0.004). Half (8/16) of children scoring 'moderate discrepancy' and all (2/2) children scoring 'severe discrepancy' had at least three domains of central nervous system impairment. INTERPRETATION: SNS were more common in children with PAE or FASD, consistent with the known neurotoxic effect of PAE. The QNST-2 is a useful screen for subtle neurological dysfunction indicating the need for more comprehensive assessment in children with PAE or FASD.
Asunto(s)
Enfermedades del Sistema Nervioso/etiología , Efectos Tardíos de la Exposición Prenatal/epidemiología , Efectos Tardíos de la Exposición Prenatal/fisiopatología , Australia/epidemiología , Niño , Estudios de Cohortes , Planificación en Salud Comunitaria , Prueba de Esfuerzo , Femenino , Trastornos del Espectro Alcohólico Fetal/epidemiología , Trastornos del Espectro Alcohólico Fetal/fisiopatología , Humanos , Masculino , Nativos de Hawái y Otras Islas del Pacífico , Enfermedades del Sistema Nervioso/diagnóstico , Examen Neurológico , Evaluación de Resultado en la Atención de Salud , Embarazo , Efectos Tardíos de la Exposición Prenatal/etnología , Estadísticas no ParamétricasRESUMEN
INTRODUCTION AND AIMS: We aimed to characterise motor performance in predominantly Aboriginal children living in very remote Australia, where rates of prenatal alcohol exposure (PAE) are high. Motor performance was assessed, and the relationship between motor skills, fetal alcohol spectrum disorders (FASD) and PAE was explored. DESIGN AND METHODS: Motor performance was assessed using the Bruininks-Oseretsky Test of Motor Proficiency-Second Edition Complete Form, in a population-based study of children born in 2002 or 2003 living in the Fitzroy Valley, Western Australia. Composite scores ≥2SD (2nd percentile) and ≥1SD (16th percentile) below the mean were used respectively for FASD diagnosis and referral for treatment. FASD diagnoses were assigned using modified Canadian Guidelines. RESULTS: A total of 108 children (Aboriginal: 98.1%; male: 53%) with a mean age of 8.7 years was assessed. The cohort's mean total motor composite score (mean ± SD 47.2 ± 7.6) approached the Bruininks-Oseretsky Test of Motor Proficiency-Second Edition normative mean (50 ± 10). Motor performance was lower in children with FASD diagnosis than without (mean difference (MD) ± SD: -5.0 ± 1.8; confidence interval: -8.6 to -1.5). There was no difference between children with PAE than without (MD ± SE: -2.2 ± 1.5; confidence interval: -5.1 to 0.80). The prevalence of motor impairment (≥-2SD) was 1.9% in the entire cohort, 9.5% in children with FASD, 3.3% in children with PAE and 0.0% both in children without PAE or FASD. DISCUSSION AND CONCLUSIONS: Almost of 10% of children with FASD has significant motor impairment. Evaluation of motor function should routinely be included in assessments for FASD, to document impairment and enable targeted early intervention.[Lucas BR, Doney R, Latimer J, Watkins RE, Tsang TW, Hawkes G, Fitzpatrick JP, Oscar J, Carter M, Elliott EJ. Impairment of motor skills in children with fetal alcohol spectrum disorders in remote Australia: The Lililwan Project. Drug Alcohol Rev 2016;35:719-727].
Asunto(s)
Desarrollo Infantil/fisiología , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Trastornos del Espectro Alcohólico Fetal/fisiopatología , Destreza Motora/fisiología , Australia , Niño , Evaluación de la Discapacidad , Femenino , Humanos , Masculino , Población Rural , Índice de Severidad de la EnfermedadRESUMEN
INTRODUCTION AND AIMS: Alcohol use in pregnancy is thought to be common in remote Australian communities, but no population-based data are available. Aboriginal leaders in remote Western Australia invited researchers to determine the prevalence and patterns of alcohol use in pregnancy within their communities. DESIGN AND METHODS: A population-based survey of caregivers of all children born in 2002/2003 and living in the Fitzroy Valley in 2010/2011 (n = 134). Alcohol use risk was categorised using the Alcohol Use Disorders Identification Test consumption subset (AUDIT-C) tool. Birth and child outcomes were determined by interview, medical record review and physical examination. RESULTS: 127/134 (95%) eligible caregivers participated: 78% were birth mothers, 95% were Aboriginal and 55% reported alcohol use in index pregnancies; 88% reported first trimester drinking and 53% drinking in all trimesters. AUDIT-C scores were calculated for 115/127 women, of whom 60 (52%) reported alcohol use in pregnancy. Of the 60 women who drank (AUDIT-C score ≥ 1), 12% drank daily/almost daily, 33% drank 2-3 times per week; 71% drank ≥ 10 standard drinks on a typical occasion; 95% drank at risky or high-risk levels (AUDIT-C score ≥ 4). Mean AUDIT-C score was 8.5 ± 2.3 (range 2-12). The most common drinking pattern was consumption of ≥ 10 standard drinks either 2-4 times per month (27%) or 2-3 times per week (27%). DISCUSSION AND CONCLUSIONS: High-risk alcohol use in pregnancy is common in remote, predominantly Aboriginal communities in north western Australia. Prevention strategies to reduce prenatal alcohol use are urgently needed.