Prevalence of fetal alcohol syndrome in a population‐based sample of children living in remote Australia: The Lililwan Project

Abstract

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.

Assessing Motor Skills to Inform a Fetal Alcohol Spectrum Disorder Diagnosis Focusing on Persons Older Than 12 Years: A Systematic Review of the Literature

“…2 The first Australian prevalence study conducted in 2009 in a remote Western Australian community with known high levels of alcohol abuse, found 12% of the children assessed met criteria for Fetal Alcohol Syndrome. 3 People with FASD can exhibit a range of neurological impairments, which are linked to difficulties including poor school completion, increased contact with the criminal justice system, decreased independent living, mental health issues, and poor peer relationships. 4,5 The Australian criteria for a FASD diagnosis has been modified, and like the Canadian guidelines with which it harmonizes, uses "FASD" as a singular umbrella term.…”

Seeking consent for research with indigenous communities: a systematic review

“…Methods described include: using pictorial aids in a flip chart, presented with a local Aboriginal researcher to seek consent for research [ 30 , 38 , 45 ]. Some studies specify that an interpreter presents the research information in local Indigenous languages [ 29 , 30 , 38 – 41 , 47 ] and some of these methods resulted in a high participation rates with 81–95 % [ 38 , 42 , 48 ], while others despite these efforts participation rates varied from 42–65 % [ 29 , 44 ]. Authors who identify as Indigenous describe a more naturalistic approach to research, through an Indigenous research paradigm, embracing cultural protocol through practices such as storytelling [ 4 , 41 , 42 ].…”

“…Researchers only seek oral consent, for fear of creating a power imbalance between themselves and the Indigenous community when seeking written consent [ 43 ]. Community collaboration and consent is essential in order to prevent researchers who are not local to a community from making assumptions about how research and the process for seeking consent should be conducted [ 4 , 30 , 38 – 42 , 45 – 48 ].…”

“…Most of the guidelines provide a general background of the principles important to uphold when conducting research with Indigenous populations, but practical specifications for engaging an Indigenous community or communicating with individual participants in order to seek free, prior, informed consent, are better garnered from individual research studies as described in Tables 1 and 2 [ 4 , 29 , 30 , 33 – 48 ].…”

“…In articles that describe the consent process in detail, those with high recruitment typically involved local Aboriginal organisations and leaders in the project design and recruitment [ 38 , 42 , 48 ]. In The Lililwan Project, researchers employed local Aboriginal people as community navigators to disseminate study information, assist with recruitment of participants and support the research team in seeking written consent from parents and carers [ 38 ].…”