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1.
Alcohol Clin Exp Res ; 44(6): 1284-1291, 2020 06.
Artículo en Inglés | MEDLINE | ID: mdl-32333805

RESUMEN

BACKGROUND: Fetal alcohol spectrum disorder (FASD) is a diagnosis relating to neurocognitive impairments associated with prenatal alcohol exposure. A key aspect of improving FASD diagnostic processes and management is understanding the demographic and neurocognitive profile of those living with FASD. The aim of this study was to describe the demographic and neurocognitive profile of the first 199 individuals diagnosed with FASD in PATCHES Paediatrics clinics. METHODS: A retrospective cross-sectional descriptive study design was conducted with individuals diagnosed with FASD between 2013 and 2018 through a multidisciplinary team according to the Australian FASD Diagnostic Guidelines. RESULTS: Participants were primarily male 133 (66.8%) and Aboriginal Australian 147 (73.9%), aged 2 to 31 (mean 10.5), with 94 (47.3%) from remote or very remote parts of Western Australia. Participants came from low 119 (59.8%), medium 48 (24.1%), and high 32 (16.1%) socioeconomic (SE) backgrounds. Low SE background was found to be a predictor of number of sentinel facial features (Wald χ2 (1) = 4.03, p < 0.05). Most received a diagnosis of FASD with <3 sentinel features 165 (82.9%). Participants either had 6 or more 46 (23.1%), 5 44 (22.1%), 4 55 (27.6%), or 3 (27.1%) neurodevelopmental domains impaired. Executive functioning was the most commonly impaired neurodevelopmental domain 158 (79.4%), and 31 (61%) reported sleep disturbance. ADHD was the most observed comorbid condition (41.7%). CONCLUSIONS: This study improves our current understanding of neurocognitive and demographic profiles in individuals with FASD that have been clinically referred for diagnosis within Western Australia and the Northern Territory, and highlights the importance of prevention and early assessment/diagnosis as well as guidance regarding more targeted interventions. FASD affects individuals from all cultural and SE backgrounds. Individuals from middle to higher SE groups are at risk of FASD with prevention efforts needing to target these sectors of society. Suggestions for future research directions are also provided.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal/epidemiología , Nativos de Hawái y Otras Islas del Pacífico , Clase Social , Población Blanca , Rendimiento Académico , Adaptación Psicológica , Adolescente , Adulto , Atención , Trastorno por Déficit de Atención con Hiperactividad/epidemiología , Trastorno por Déficit de Atención con Hiperactividad/psicología , Niño , Preescolar , Estudios Transversales , Función Ejecutiva , Femenino , Trastornos del Espectro Alcohólico Fetal/etnología , Trastornos del Espectro Alcohólico Fetal/fisiopatología , Trastornos del Espectro Alcohólico Fetal/psicología , Humanos , Lenguaje , Masculino , Northern Territory/epidemiología , Estudios Retrospectivos , Población Rural , Distribución por Sexo , Trastornos del Sueño-Vigilia/epidemiología , Trastornos del Sueño-Vigilia/fisiopatología , Australia Occidental/epidemiología , Adulto Joven
2.
Rural Remote Health ; 19(4): 5206, 2019 10.
Artículo en Inglés | MEDLINE | ID: mdl-31619043

RESUMEN

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.


Asunto(s)
Cuidadores/psicología , Familia/psicología , Trastornos del Espectro Alcohólico Fetal/etnología , Adolescente , Niño , Preescolar , Femenino , Servicios de Atención de Salud a Domicilio , Humanos , Inteínas , Masculino , Nativos de Hawái y Otras Islas del Pacífico , Problema de Conducta/psicología , Investigación Cualitativa , Grupos de Autoayuda , Apoyo Social , Estrés Psicológico/epidemiología , Australia Occidental/epidemiología
3.
Alcohol Clin Exp Res ; 42(9): 1807-1814, 2018 09.
Artículo en Inglés | MEDLINE | ID: mdl-29972869

RESUMEN

BACKGROUND: Fetal alcohol spectrum disorders are a major public health concern including among American Indian (AI)/Alaska Native (AN) communities. Various studies have demonstrated higher alcohol consumption among AI/AN women during pregnancy compared with other groups. This study intends to understand the milieu within which such consumption patterns flourish. The study utilizes qualitative and quantitative data from the Oglala Sioux Tribe (OST) CHOICES Program, a tribally run public health program that aims to reduce alcohol-exposed pregnancy preconceptually in AI women. METHODS: Alcohol consumption pattern (n = 264) is analyzed using descriptive statistics. Consumption patterns included average drinks consumed daily, their choice of drinks (beer, whiskey, wine, etc.), how much money participants were spending on alcohol and amount of calories consumed from alcohol. Qualitative data analysis included open coding of data from decisional balance exercise of the CHOICES program that looked at good things and not so good things about participants' drinking. RESULTS: Women reported drinking an average of 12 drinks daily, ranging between 1 and 86. Women drinking at home spent a median of $4,320 and $12,960 if drinking at a bar. A median of 1,200 calories per day from alcohol was reported. More women reported drinking beer compared with other types of alcohol within a domestic setting. Qualitative data analysis identified positive and negative aspects of drinking among the participants of OST CHOICES Program. Positive aspects included escaping from problems, socializing, and relaxation. Negative aspects included impact on families and domestic violence. CONCLUSIONS: While understanding their milieu, our study also unraveled different struggles (such as violence, peer pressure, financial burden, and depression) encountered by Native women in their daily lives. According to the participants, positive aspects of drinking outweigh the negative aspects and they viewed their drinking as a solution and not a problem.


Asunto(s)
Consumo de Bebidas Alcohólicas/etnología , Análisis de Datos , Trastornos del Espectro Alcohólico Fetal/etnología , Indígenas Norteamericanos/etnología , Adolescente , Adulto , Consumo de Bebidas Alcohólicas/prevención & control , Consumo de Bebidas Alcohólicas/psicología , Femenino , Trastornos del Espectro Alcohólico Fetal/prevención & control , Trastornos del Espectro Alcohólico Fetal/psicología , Humanos , Indígenas Norteamericanos/psicología , Masculino , Persona de Mediana Edad , Estados Unidos/etnología , Adulto Joven
4.
JAMA ; 319(5): 474-482, 2018 02 06.
Artículo en Inglés | MEDLINE | ID: mdl-29411031

RESUMEN

Importance: Fetal alcohol spectrum disorders are costly, life-long disabilities. Older data suggested the prevalence of the disorder in the United States was 10 per 1000 children; however, there are few current estimates based on larger, diverse US population samples. Objective: To estimate the prevalence of fetal alcohol spectrum disorders, including fetal alcohol syndrome, partial fetal alcohol syndrome, and alcohol-related neurodevelopmental disorder, in 4 regions of the United States. Design, Setting, and Participants: Active case ascertainment methods using a cross-sectional design were used to assess children for fetal alcohol spectrum disorders between 2010 and 2016. Children were systematically assessed in the 4 domains that contribute to the fetal alcohol spectrum disorder continuum: dysmorphic features, physical growth, neurobehavioral development, and prenatal alcohol exposure. The settings were 4 communities in the Rocky Mountain, Midwestern, Southeastern, and Pacific Southwestern regions of the United States. First-grade children and their parents or guardians were enrolled. Exposures: Alcohol consumption during pregnancy. Main Outcomes and Measures: Prevalence of fetal alcohol spectrum disorders in the 4 communities was the main outcome. Conservative estimates for the prevalence of the disorder and 95% CIs were calculated using the eligible first-grade population as the denominator. Weighted prevalences and 95% CIs were also estimated, accounting for the sampling schemes and using data restricted to children who received a full evaluation. Results: A total of 6639 children were selected for participation from a population of 13 146 first-graders (boys, 51.9%; mean age, 6.7 years [SD, 0.41] and white maternal race, 79.3%). A total of 222 cases of fetal alcohol spectrum disorders were identified. The conservative prevalence estimates for fetal alcohol spectrum disorders ranged from 11.3 (95% CI, 7.8-15.8) to 50.0 (95% CI, 39.9-61.7) per 1000 children. The weighted prevalence estimates for fetal alcohol spectrum disorders ranged from 31.1 (95% CI, 16.1-54.0) to 98.5 (95% CI, 57.5-139.5) per 1000 children. Conclusions and Relevance: Estimated prevalence of fetal alcohol spectrum disorders among first-graders in 4 US communities ranged from 1.1% to 5.0% using a conservative approach. These findings may represent more accurate US prevalence estimates than previous studies but may not be generalizable to all communities.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal/epidemiología , Adulto , Niño , Preescolar , Estudios Transversales , Femenino , Trastornos del Espectro Alcohólico Fetal/etnología , Humanos , Masculino , Madres , Prevalencia , Muestreo , Factores Socioeconómicos , Estados Unidos/epidemiología
5.
Health Promot J Austr ; 29(1): 31-38, 2018 04.
Artículo en Inglés | MEDLINE | ID: mdl-29700936

RESUMEN

ISSUE ADDRESSED: Foetal Alcohol Spectrum Disorder (FASD) includes a range of life-long impairments caused by alcohol exposure in utero. Health professionals are vital to preventing FASD but many are hesitant to discuss FASD with clients due to their need for additional resources to aid the conversation. This scan sought to identify the scope and gaps in publicly available FASD prevention and health promotion resources, and assess their cultural appropriateness for use among five key groups of Indigenous Australian people including: (i) pregnant women, (ii) women of childbearing age, (iii) grandmothers and aunties, (iv) men, and (v) health professionals. METHODS: Relevant resources published 1995-2017 were identified through the Australian Indigenous HealthInfoNet, FASD organisation websites, grey literature, Google searches, and field experts. Results were screened by inclusion and cultural appropriateness criteria developed and piloted by the research team, and further screened by health professionals attending FASD training workshops. RESULTS: 115 of the 2146 identified resources were eligible. Relevant resources were found for all five key groups; however, no resources were specifically designed for men, grandmothers or aunties. CONCLUSIONS: A range of high-quality, culturally appropriate resources were identified, however, health professionals attending the training workshops were not aware of their availability. Further resource development is suggested for men, grandmothers and aunties. SO WHAT?: Prioritisation of active dissemination and implementation strategies is suggested to increase awareness and use of future resource developments. The inclusion of a resource trial among health professionals is a recommended strategy to increase awareness and use of newly developed resources.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal/prevención & control , Servicios de Salud del Indígena , Nativos de Hawái y Otras Islas del Pacífico , Australia , Femenino , Trastornos del Espectro Alcohólico Fetal/etnología , Promoción de la Salud , Humanos , Masculino , Embarazo
6.
Alcohol Clin Exp Res ; 41(8): 1471-1483, 2017 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-28608920

RESUMEN

BACKGROUND: Our objective is to help clinicians detect the facial effects of prenatal alcohol exposure by developing computer-based tools for screening facial form. METHODS: All 415 individuals considered were evaluated by expert dysmorphologists and categorized as (i) healthy control (HC), (ii) fetal alcohol syndrome (FAS), or (iii) heavily prenatally alcohol exposed (HE) but not clinically diagnosable as FAS; 3D facial photographs were used to build models of facial form to support discrimination studies. Surface curvature-based delineations of facial form were introduced. RESULTS: (i) Facial growth in FAS, HE, and control subgroups is similar in both cohorts. (ii) Cohort consistency of agreement between clinical diagnosis and HC-FAS facial form classification is lower for midline facial regions and higher for nonmidline regions. (iii) Specific HC-FAS differences within and between the cohorts include: for HC, a smoother philtrum in Cape Coloured individuals; for FAS, a smoother philtrum in Caucasians; for control-FAS philtrum difference, greater homogeneity in Caucasians; for control-FAS face difference, greater homogeneity in Cape Coloured individuals. (iv) Curvature changes in facial profile induced by prenatal alcohol exposure are more homogeneous and greater in Cape Coloureds than in Caucasians. (v) The Caucasian HE subset divides into clusters with control-like and FAS-like facial dysmorphism. The Cape Coloured HE subset is similarly divided for nonmidline facial regions but not clearly for midline structures. (vi) The Cape Coloured HE subset with control-like facial dysmorphism shows orbital hypertelorism. CONCLUSIONS: Facial curvature assists the recognition of the effects of prenatal alcohol exposure and helps explain why different facial regions result in inconsistent control-FAS discrimination rates in disparate ethnic groups. Heavy prenatal alcohol exposure can give rise to orbital hypertelorism, supporting a long-standing suggestion that prenatal alcohol exposure at a particular time causes increased separation of the brain hemispheres with a concomitant increase in orbital separation.


Asunto(s)
Cara/patología , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Trastornos del Espectro Alcohólico Fetal/etnología , Efectos Tardíos de la Exposición Prenatal/diagnóstico , Efectos Tardíos de la Exposición Prenatal/etnología , Adolescente , Niño , Estudios de Cohortes , Etnicidad , Femenino , Humanos , Masculino , Embarazo
7.
Alcohol Clin Exp Res ; 41(4): 828-835, 2017 04.
Artículo en Inglés | MEDLINE | ID: mdl-28173632

RESUMEN

BACKGROUND: Fetal alcohol spectrum disorders (FASD) comprise a continuum of lifelong outcomes in those born prenatally exposed to alcohol. Although studies have shown no differences in rates by race, FASD is of particular concern for American Indian communities. One tribally run prevention program is the Oglala Sioux Tribe (OST) CHOICES Program, which is modeled after the evidence-based CHOICES program that was focused on preconceptional prevention of alcohol-exposed pregnancy (AEP) by reducing risky drinking in women at risk for pregnancy and/or preventing unintended pregnancy. METHODS: The OST CHOICES Program was made culturally appropriate for American Indian women and implemented with 3 communities, 2 on the reservation and 1 off. Data on drinking, sexual activity, and contraception use were collected at baseline and 3 and 6 months postintervention. Data were analyzed using descriptive statistics, 1-way analysis of variance, and a random intercept generalized estimating equation model. RESULTS: A total of 193 nonpregnant American Indian women enrolled in the OST CHOICES Program, and all were at risk for AEP because of binge drinking and being at risk for an unintended pregnancy. Fifty-one percent of participants completed both 3- and 6-month follow-ups. Models showed a significant decrease in AEP risk from baseline at both 3- and 6-month follow-ups, indicating the significant impact of the OST CHOICES intervention. Women in the OST CHOICES Program were more likely to reduce their risk for AEP by utilizing contraception, rather than decreasing binge drinking. CONCLUSIONS: Even with minor changes to make the CHOICES intervention culturally and linguistically appropriate and the potential threats to program validity those changes entail, we found a significant impact in reducing AEP risk. This highlights the capacity for the CHOICES intervention to be implemented in a wide variety of settings and populations.


Asunto(s)
Consumo de Bebidas Alcohólicas/etnología , Consumo de Bebidas Alcohólicas/prevención & control , Conductas de Riesgo para la Salud , Indígenas Norteamericanos/educación , Indígenas Norteamericanos/etnología , Conducta de Reducción del Riesgo , Consumo de Bebidas Alcohólicas/psicología , Conducta de Elección , Femenino , Trastornos del Espectro Alcohólico Fetal/etnología , Trastornos del Espectro Alcohólico Fetal/prevención & control , Trastornos del Espectro Alcohólico Fetal/psicología , Estudios de Seguimiento , Humanos , Indígenas Norteamericanos/psicología , Embarazo , Encuestas y Cuestionarios
8.
Alcohol Clin Exp Res ; 41(11): 1938-1945, 2017 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-28833270

RESUMEN

BACKGROUND: Reduction of risky drinking in women of childbearing age is 1 strategy that may be employed to prevent fetal alcohol spectrum disorder, a sequela of prenatal alcohol exposure. Communities differ in risk and protective factors, necessitating culturally informed interventions for maximal efficacy. This article describes the modification of an existing web-based screening, brief intervention, and referral to treatment intervention to reduce risky drinking among American Indian Alaska Native (AIAN) women of childbearing age in Southern California into a peer-to-peer-based intervention using motivational interviewing (MI). METHODS: The modification process was iterative and included various community focus groups, interviews, and a final review. RESULTS: Intervention modification was required for cultural congruence. Components of the peer-to-peer intervention designed by this project included a flip chart used to guide the motivational interviewing, charts of the financial and physical costs of alcohol consumption, revised baseline and follow-up questionnaires, and guidance regarding the application of MI techniques. CONCLUSIONS: This study may inform the modification of future interventions among AIAN communities.


Asunto(s)
/etnología , Consumo de Bebidas Alcohólicas/etnología , Consumo de Bebidas Alcohólicas/prevención & control , Indígenas Norteamericanos/etnología , Entrevista Motivacional/métodos , Salud Pública/métodos , Adolescente , Adulto , Factores de Edad , Alaska/etnología , Consumo de Bebidas Alcohólicas/psicología , California/etnología , Intervención Médica Temprana/métodos , Femenino , Trastornos del Espectro Alcohólico Fetal/etnología , Trastornos del Espectro Alcohólico Fetal/prevención & control , Trastornos del Espectro Alcohólico Fetal/psicología , Humanos , Indígenas Norteamericanos/psicología , Persona de Mediana Edad , Embarazo , Efectos Tardíos de la Exposición Prenatal/etnología , Efectos Tardíos de la Exposición Prenatal/prevención & control , Efectos Tardíos de la Exposición Prenatal/psicología , Adulto Joven
9.
Aust Occup Ther J ; 64(1): 68-78, 2017 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-27646500

RESUMEN

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.


Asunto(s)
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/epidemiología
10.
Aust Occup Ther J ; 64(3): 243-252, 2017 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-27966224

RESUMEN

BACKGROUND/AIM: Although previous research has demonstrated the benefits of targeting self-regulation in non-Aboriginal children, it is unclear whether such programs would be effective for Aboriginal children attending school in remote communities. Some of these children have been diagnosed with a fetal alcohol spectrum disorder (FASD) impairing their ability to self-regulate. The aim of this article is to describe a three phase formative process to develop and pilot a curriculum version of the Alert Program® , a promising intervention for improving self-regulation that could be used in remote community schools. This modified version of the program will be subsequently tested in a cluster randomised controlled trial. METHODS: A mixed methods approach was used. RESULTS: Modifications to the Alert Program® , its delivery and evaluation were made after community and stakeholder consultation facilitated by a senior Aboriginal community researcher. Changes to lesson plans and program resources were made to reflect the remote community context, classroom environment and the challenging behaviours of children. Standardised study outcome measures were modified by removing several questions that had little relevance to the lives of children in remote communities. Program training for school staff was reduced in length to reduce staff burden. CONCLUSIONS: This study identified aspects of the Alert Program® training, delivery and measures for evaluation that need modification before their use in assessing the efficacy of the Alert Program® in remote Aboriginal community primary schools.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal/rehabilitación , Servicios de Salud del Indígena/organización & administración , Nativos de Hawái y Otras Islas del Pacífico , Terapia Ocupacional/organización & administración , Servicios de Salud Escolar/organización & administración , Adolescente , Australia , Niño , Preescolar , Participación de la Comunidad/métodos , Investigación Participativa Basada en la Comunidad/organización & administración , Competencia Cultural , Curriculum , Femenino , Trastornos del Espectro Alcohólico Fetal/etnología , Humanos , Capacitación en Servicio/organización & administración , Comunicación Interdisciplinaria , Entrevistas como Asunto , Masculino , Proyectos Piloto , Desarrollo de Programa , Población Rural
11.
Am J Med Genet A ; 167A(4): 752-5, 2015 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-25711340

RESUMEN

The adverse effects of maternal alcohol use during pregnancy represent a spectrum of growth restriction, facial dysmorphology, and neurocognitive challenges in the offspring. The continuum of diagnoses is referred to as fetal alcohol spectrum disorders (FASD). Short palpebral fissures, a smooth philtrum, and a thin vermilion border of the upper lip comprise the three cardinal facial features of FASD. Early attempts to define a smooth philtrum and thin vermilion border of the upper lip were subjective. Astley and colleagues introduced a 5-point Likert-scaled lip/philtrum guide based on Caucasian North American subjects as an objective tool for the evaluation of the facial dysmorphology in FASD. This Caucasian guide has been incorporated into all current diagnostic schemes for FASD. However, broad international clinical experience with FASD indicates racial and ethnic differences with respect to the facial morphology. Because of the substantial number of children with FASD in South Africa among the Cape Coloured (mixed race) population in the Western Cape Province, we developed a specific lip/philtrum guide for that population. The guide incorporates a 45-degree view of the philtrum that enables an enhanced 3-dimensional evaluation of philtral height not possible with a frontal view alone. The guide has proven to be a more specific and sensitive tool for evaluation of the facial dysmorphology of FASD in the Cape Coloured population than the use of the previous North American Caucasian guide and points to the utility of racial and ethnic-specific dysmorphology tools in the evaluation of children with suspected FASD.


Asunto(s)
Facies , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Femenino , Trastornos del Espectro Alcohólico Fetal/etnología , Humanos , Labio/anomalías , Masculino , Fenotipo , Sudáfrica
13.
BJOG ; 122(6): 795-804, 2015 May.
Artículo en Inglés | MEDLINE | ID: mdl-25135372

RESUMEN

OBJECTIVE: To examine fetal outcomes of mothers with an alcohol-related diagnosis. DESIGN: Population-based cohort. SETTING: Western Australia (WA). POPULATION: Births on the WA Midwives Notification System (1983-2007). METHODS: Infants of mothers with an alcohol-related diagnosis [International Classification of Disease (ICD), 9th/10th revisions] recorded on WA health data sets (non-Aboriginal n = 13 807; Aboriginal n = 9766) were identified through the WA data linkage system. A comparison cohort of infants born to mothers without an alcohol diagnosis was frequency matched on maternal age, year of birth of the offspring, and Aboriginal status (non-Aboriginal n = 40 148; Aboriginal n = 20 643). MAIN OUTCOME MEASURES: Poisson regression-generated adjusted relative risk (aRR) and 95% confidence intervals (95% CIs) for small for gestational age (SGA), preterm birth, and low-Apgar score, calculated separately for non-Aboriginal and Aboriginal infants of mothers with an alcohol diagnosis recorded during pregnancy and any alcohol diagnosis. Population-attributable fractions were calculated. RESULTS: The aRR for non-Aboriginal infants when a maternal alcohol diagnosis was recorded during pregnancy ranged from 1.79 (95% CI 1.42-2.16) for SGA to 2.57 (95% CI 1.69-4.27) for preterm birth <32 weeks of gestation, and for Aboriginal infants ranged from 2.69 (95% CI 2.28-3.16) to 1.99 (95% CI 1.40-2.84), respectively. The highest population-attributable fractions were for any alcohol diagnosis and for Aboriginal infants. For Aboriginal births, approximately 9% (95% CI 4.74-12.97) and 10.1% (95% CI 5.50-14.49) of moderate and very preterm births, respectively, and 24.4% (95% CI 13.5-21.2%) of SGAs were attributable to having a mother with any alcohol-related diagnosis. CONCLUSIONS: Mothers with an alcohol diagnosis are at increased risk of poor pregnancy outcomes. The public health impact of maternal alcohol-use disorders on fetal outcomes is significant.


Asunto(s)
Trastornos Relacionados con Alcohol , Trastornos del Espectro Alcohólico Fetal/etiología , Complicaciones del Embarazo , Adulto , Trastornos Relacionados con Alcohol/etnología , Estudios de Casos y Controles , Estudios de Cohortes , Femenino , Trastornos del Espectro Alcohólico Fetal/etnología , Humanos , Recién Nacido , Nativos de Hawái y Otras Islas del Pacífico , Distribución de Poisson , Embarazo , Complicaciones del Embarazo/etnología , Resultado del Embarazo , Análisis de Regresión , Medición de Riesgo , Factores de Riesgo , Australia Occidental/epidemiología
14.
J Paediatr Child Health ; 51(4): 450-7, 2015 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-25594247

RESUMEN

AIM: Aboriginal leaders concerned about high rates of alcohol use in pregnancy invited researchers to determine the prevalence of fetal alcohol syndrome (FAS) and partial fetal alcohol syndrome (pFAS) in their communities. METHODS: Population-based prevalence study using active case ascertainment in children born in 2002/2003 and living in the Fitzroy Valley, in Western Australia (April 2010-November 2011) (n = 134). Socio-demographic and antenatal data, including alcohol use in pregnancy, were collected by interview with 127/134 (95%) consenting parents/care givers. Maternal/child medical records were reviewed. Interdisciplinary assessments were conducted for 108/134 (81%) children. FAS/pFAS prevalence was determined using modified Canadian diagnostic guidelines. RESULTS: In 127 pregnancies, alcohol was used in 55%. FAS or pFAS was diagnosed in 13/108 children, a prevalence of 120 per 1000 (95% confidence interval 70-196). Prenatal alcohol exposure was confirmed for all children with FAS/pFAS, 80% in the first trimester and 50% throughout pregnancy. Ten of 13 mothers had Alcohol Use Disorders Identification Test scores and all drank at a high-risk level. Of children with FAS/pFAS, 69% had microcephaly, 85% had weight deficiency and all had facial dysmorphology and central nervous system abnormality/impairment in three to eight domains. CONCLUSIONS: The population prevalence of FAS/pFAS in remote Aboriginal communities of the Fitzroy Valley is the highest reported in Australia and similar to that reported in high-risk populations internationally. Results are likely to be generalisable to other age groups in the Fitzroy Valley and other remote Australian communities with high-risk alcohol use during pregnancy. Prevention of FAS/pFAS is an urgent public health challenge.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal/etnología , Nativos de Hawái y Otras Islas del Pacífico/estadística & datos numéricos , Salud Rural/etnología , Adolescente , Adulto , Consumo de Bebidas Alcohólicas/efectos adversos , Consumo de Bebidas Alcohólicas/etnología , Niño , Femenino , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Trastornos del Espectro Alcohólico Fetal/etiología , Humanos , Masculino , Conducta Materna/etnología , Embarazo , Prevalencia , Factores de Riesgo , Salud Rural/estadística & datos numéricos , Australia Occidental/epidemiología , Adulto Joven
15.
Qual Health Res ; 25(6): 820-30, 2015 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-25888693

RESUMEN

The purpose of this study was to use a mixed-methods approach to determine the validity and reliability of measurements used within an alcohol-exposed pregnancy prevention program for American Indian women. To develop validity, content experts provided input into the survey measures, and a "think aloud" methodology was conducted with 23 American Indian women. After revising the measurements based on this input, a test-retest was conducted with 79 American Indian women who were randomized to complete either the original measurements or the new, modified measurements. The test-retest revealed that some of the questions performed better for the modified version, whereas others appeared to be more reliable for the original version. The mixed-methods approach was a useful methodology for gathering feedback on survey measurements from American Indian participants and in indicating specific survey questions that needed to be modified for this population.


Asunto(s)
Estudios de Evaluación como Asunto , Trastornos del Espectro Alcohólico Fetal/prevención & control , Trastornos del Espectro Alcohólico Fetal/psicología , Encuestas Epidemiológicas/estadística & datos numéricos , Indígenas Norteamericanos/psicología , Investigación Cualitativa , Proyectos de Investigación , Encuestas y Cuestionarios , Pensamiento , Conducta Verbal , Adulto , Anciano , Toma de Decisiones , Femenino , Trastornos del Espectro Alcohólico Fetal/etnología , Humanos , Recién Nacido , Persona de Mediana Edad , Embarazo , Psicometría/estadística & datos numéricos , Reproducibilidad de los Resultados , Medición de Riesgo/estadística & datos numéricos , Adulto Joven
16.
Artículo en Inglés | MEDLINE | ID: mdl-38248547

RESUMEN

The Strong Born Campaign (2022-2025) was launched by the National Aboriginal Community Controlled Health Organisation (NACCHO) in 2023. Strong Born is the first of its kind national Aboriginal and Torres Strait Islander health promotion campaign to address Fetal Alcohol Spectrum Disorder (FASD) within Australia. Strong Born was developed to address a longstanding, significant gap in health promotion and sector knowledge on FASD, a lifelong disability that can result from alcohol use during pregnancy. Utilizing a strengths-based and culturally sound approach, NACCHO worked closely with the Aboriginal Community Controlled Health Organisations (ACCHOs) to develop the campaign through co-design, as described in this paper. Since its inception, the ACCHOs have continually invested in driving change towards improvements in Aboriginal health determinants and health promotion. The Strong Born Campaign developed culturally safe health promotion tool kits designed for the community and health sector staff and also offered communities the opportunity to apply for FASD Communications and Engagement Grants to engage in local campaign promotion. The tool kits have been disseminated to 92 ACCHOs across Australia. This paper describes the development of the Strong Born Campaign and activities following its launch in February 2023 from an Indigenous context within Australia, as described by NACCHO.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal , Promoción de la Salud , Servicios de Salud del Indígena , Femenino , Humanos , Embarazo , Australia , Trastornos del Espectro Alcohólico Fetal/epidemiología , Trastornos del Espectro Alcohólico Fetal/etnología , Trastornos del Espectro Alcohólico Fetal/prevención & control , Salud Pública , Recién Nacido
17.
J Paediatr Child Health ; 48(3): 190-2, 2012 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-22417462

RESUMEN

Aboriginal women in the remote Fitzroy Valley region in Western Australia's Kimberley were concerned about high rates of alcohol use in pregnancy and its possible impact on child development. They successfully lobbied for restricted access to alcohol in 2007. In 2009 they developed a strategy for the diagnosis and prevention of Fetal Alcohol Spectrum Disorders (FASD) and the support of parents and carers of affected children. Aboriginal organisations then partnered with research and clinical groups from Sydney to conduct a FASD prevalence study. This commenced in 2010 following extensive community consultation and receipt of community consent. Data from this study are still being collected and will be used by the community to advocate for improved services and new models of health care. Prevention of FASD is important to optimise health and development for future generations of Aboriginal children and to ensure the transfer of culture and language from one generation to the next.


Asunto(s)
Consumo de Bebidas Alcohólicas/epidemiología , 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/etnología , Relaciones Comunidad-Institución , Estudios Transversales , Atención a la Salud , Estudios Epidemiológicos , Femenino , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Humanos , Embarazo , Australia Occidental/epidemiología
18.
Health Promot Pract ; 13(6): 842-7, 2012 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-22167361

RESUMEN

Alcohol-exposed pregnancies are especially of concern for American Indians. The Indian Health Service reported that 47% to 56% of pregnant patients admitted to drinking alcohol during their pregnancy. In addition, rates of Fetal Alcohol Syndrome are estimated to be as high as 3.9 to 9.0 per 1,000 live births among American Indians in the Northern Plains, making prevention of alcohol-exposed pregnancies an important public health effort for this population. The goal of this article is to add to the literature on universal prevention of Fetal Alcohol Spectrum disorders by describing the development, dissemination, and evaluation of a media campaign on Fetal Alcohol Spectrum Disorders that was created by and for American Indian communities in the Northern Plains.


Asunto(s)
Consumo de Bebidas Alcohólicas/prevención & control , Competencia Cultural , Trastornos del Espectro Alcohólico Fetal/prevención & control , Promoción de la Salud/métodos , Indígenas Norteamericanos/educación , Adolescente , Adulto , Consumo de Bebidas Alcohólicas/efectos adversos , Consumo de Bebidas Alcohólicas/etnología , Investigación Participativa Basada en la Comunidad , Femenino , Trastornos del Espectro Alcohólico Fetal/etnología , Grupos Focales , Humanos , Indígenas Norteamericanos/psicología , Medios de Comunicación de Masas , Noroeste de Estados Unidos/epidemiología , Estados del Pacífico/epidemiología , Embarazo , Evaluación de Programas y Proyectos de Salud , Mercadeo Social , Adulto Joven
19.
Alcohol Clin Exp Res ; 35(6): 1081-91, 2011 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-21332531

RESUMEN

BACKGROUND: Alcohol consumption during pregnancy, a known teratogen often associated with drug use and smoking is a well-known public health concern. AIM: This study provides prevalence data for alcohol, smoking, and illicit drug use before, during, and after pregnancy among Inuit. Factors associated with alcohol use are also identified. METHODS: Two hundred and eight Inuit women from Arctic Quebec were interviewed at mid-pregnancy, and at 1 and 11 months postpartum to provide descriptive data on smoking, alcohol, and drug use during pregnancy, and the year before and after pregnancy. Sociodemographic and family characteristics potentially associated with alcohol use were documented. RESULTS: Ninety-two percent of the women reported smoking and 61% reported drinking during pregnancy. Episodes of binging during pregnancy were reported by 62% of the alcohol users, which correspond to 38% of pregnant women. Thirty-six percent of the participants reported using marijuana during pregnancy. Alcohol use and binge drinking during pregnancy were more likely to be reported by women who lived in less crowded houses, had a better knowledge of a second language, drank alcohol more often and in larger amounts prior to pregnancy, and used illicit drugs. Binge drinkers were more likely to be single women and to have had fewer previous pregnancies. Postpartum distress and violence were more likely to be experienced by women who used alcohol during pregnancy. Binge drinking during pregnancy was best predicted by drinking habits before pregnancy, maternal symptoms of depression, the use of illicit drugs during pregnancy, and the number of young children living with the mother. CONCLUSIONS: These results confirm that alcohol is a major risk factor to maternal and child health in this population, underscoring the need for culturally relevant and effective prevention programs.


Asunto(s)
Consumo de Bebidas Alcohólicas/etnología , Etanol/envenenamiento , Inuk/etnología , Complicaciones del Embarazo/etnología , Fumar/etnología , Trastornos Relacionados con Sustancias/etnología , Adolescente , Adulto , Factores de Edad , Consumo de Bebidas Alcohólicas/efectos adversos , Femenino , Trastornos del Espectro Alcohólico Fetal/etnología , Humanos , Lactante , Recién Nacido , Embarazo , Complicaciones del Embarazo/etiología , Efectos Tardíos de la Exposición Prenatal/etnología , Factores de Riesgo , Fumar/efectos adversos , Trastornos Relacionados con Sustancias/complicaciones , Adulto Joven
20.
Fam Community Health ; 34(3): 242-5, 2011.
Artículo en Inglés | MEDLINE | ID: mdl-21633217

RESUMEN

Fetal alcohol spectrum disorders, the most common preventable cause for mental retardation, is the result of prenatal alcohol exposure. There is no safe amount of alcohol during pregnancy. Native Americans have a higher risk of alcohol abuse than the general U.S. population. The fetal alcohol spectrum disorders prevalence rates for Native Americans range from 1.0 to 8.97 per 1000 births. Nurses and health care providers working in collaboration with tribal fetal alcohol spectrum disorders prevention specialists can greatly, and positively, impact the physical and mental health and well-being of children in Native American communities.


Asunto(s)
Consumo de Bebidas Alcohólicas/efectos adversos , Trastornos del Espectro Alcohólico Fetal/prevención & control , Indígenas Norteamericanos/psicología , Salud de la Mujer , Femenino , Trastornos del Espectro Alcohólico Fetal/epidemiología , Trastornos del Espectro Alcohólico Fetal/etnología , Necesidades y Demandas de Servicios de Salud , Humanos , Servicios de Salud Materna , Embarazo , Desarrollo de Programa , Factores de Riesgo , Estados Unidos/epidemiología
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