Search

Drawing from Australian Aboriginal and Torres Strait Islander perspectives, we conceptualize the association between community participation and continuous quality improvement (CQI) processes in Indigenous primary health care (PHC) services. Indigenous experiences of community participation were drawn from our study identifying contextual factors affecting CQI processes in high-improving PHC services. Using case study design, we collected quantitative and qualitative data at the micro-, meso-, and macro-health system level in 2014 and 2015 in six services in northern Australia. Analyzing qualitative data, we found community participation was an important contextual factor in five of the six services. Embedded in cultural foundations, cultural rules, and expectations, community participation involved interacting elements of trusting relationships in metaphorically safe spaces, and reciprocated learning about each other’s perspectives. Foregrounding Indigenous perspectives on community participation might assist more effective participatory processes in Indigenous PHC including in CQI processes.

Self-regulation and executive functioning impairments are common in children with fetal alcohol spectrum disorder. Given the high rates of fetal alcohol spectrum disorder identified amongst children living in the remote Fitzroy Valley region of Western Australia, the Alert Program® was identified as a culturally safe intervention for use in local primary schools. Researchers collaborated with Aboriginal Elders, community members, and staff from a Fitzroy Valley primary school to trial the Alert Program®. Teachers were trained to deliver eight Alert Program® lessons to children in class. Self-regulation and executive functioning were measured using teacher and parent/caregiver questionnaires three times. Data were analyzed using repeated-measures ANOVA. Teacher-led delivery of the Alert Program® was feasible in a region with high fetal alcohol spectrum disorder rates. As measured by teacher and parent/caregiver ratings, this curriculum may improve the self-regulation and executive functioning of children for some outcomes and provide sustained effects for some children. This community partnered pilot research, evaluated a school-based program to reduce the behavioral impact of fetal alcohol spectrum disorder, and informed design of a larger trial across eight Aboriginal community schools.

Introduction: 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. We aim to review the literature to describe health services and their use by children living in remote Australia, comparing them to best practice models to identify opportunities for improvements.Methods: Electronic-databases of medical literature were searched from Jan 1990 to Dec 2013. Grey literature was identified through investigation of websites, including local, state and national health departments. Essential information was extracted and summarised for papers meeting inclusion criteria for the review.Results: A total of 45 titles was identified in a strategic search of electronic medical databases and 47 in the grey literature. Strict inclusion and exclusion criteria applied. Data were extracted from 92 documents.Conclusions: Barriers exist to effective child health service delivery in remote Australia including availability and access. Existing services cannot meet demand. Gold standard models for service delivery incorporating community engagement and collaboration should be explored. Increased resources and focus on primary prevention and health promotion are essential.

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.

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.

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.

Executive functioning and self-regulation influence a range of outcomes across the life course including physical and mental health, educational success, and employment. Children prenatally exposed to alcohol or early life trauma (ELT) are at higher risk of impairment of these skills and may require intervention to address self-regulation deficits. Researchers partnered with the local Aboriginal health organization and schools to develop and pilot a manualized version of the Alert Program® in the Fitzroy Valley, north Western Australia, a region with documented high rates of fetal alcohol spectrum disorder and ELT. This self-controlled cluster randomized trial evaluated the effect of an 8-week Alert Program® intervention on children’s executive functioning and self-regulation skills. Following parent or caregiver consent (referred to hereafter as parent), 271 students were enrolled in the study. This reflects a 75% participation rate and indicates the strong community support that exists for the study. Teachers from 26 primary school classrooms across eight Fitzroy Valley schools received training to deliver eight, one-hour Alert Program® lessons over eight-weeks to students. Student outcomes were measured by parent and teacher ratings of children’s behavioral, emotional, and cognitive regulation. The mean number of lessons attended by children was 4.2. Although no significant improvements to children’s executive functioning skills or behavior were detected via the teacher-rated measures as hypothesized, statistically significant improvements were noted on parent-rated measures of executive functioning and behavior. The effectiveness of future self-regulation programs may be enhanced through multimodal delivery through home, school and community based settings to maximize children’s exposure to the intervention. Despite mixed findings of effect, this study was an important first step in adapting and evaluating the Alert Program® for use in remote Australian Aboriginal community schools, where access to self-regulation interventions is limited.

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.

Background Aboriginal leaders invited us to examine the frequency and reasons for children presenting to Fitzroy Crossing Hospital emergency department (ED), Western Australia.Methods ED presentations (2007-11 inclusive) were examined for children born in the Fitzroy Valley in 2002-03.Results ED data were examined for 127/134 (94.7%) eligible children, with 1058 presentations for 1743 conditions in children aged 3-9 over 5 years. Most (81%) had at least one ED presentation (median 9.0, range 1-50). There were no differences by sex or season but numbers of presentations increased over time. Common presentations included: injury (15.1%), diseases of the ear (14.9%), skin (13.8%), respiratory tract (13.4%), infectious and parasitic diseases (9.8%), screening, follow up, and social reasons (16.0%). Household over-crowding, financial and food insecurity were common socio-economic factors recorded at ED presentation. Prenatal alcohol exposure (PAE) was significantly associated with high-frequency (>10) ED presentations.Conclusion Children in very remote Fitzroy Crossing communities have high rates of preventable ED presentations, with higher rates in those with than without PAE. Support for culturally appropriate preventative programs and improved access to health services need to be provided in remote Australia.

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.

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.

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]

IntroductionResearch 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 analysisWe 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 disseminationEthics 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.

Objective To evaluate the impact of a comprehensive primary health care service model on key health performance indicators in a remote region of Australia. Design and setting A cross-sectional 6-year retrospective evaluation of the results of a health service partnership between an Aboriginal community controlled health service, a hospital and a community health service in north-west Western Australia. Intervention Integration of health promotion, health assessments and chronic disease management with an acute primary health care service as a result of the formal partnership. Main outcome measures Cross-sectional data on use and outcomes of health care from 1 July 2006 to 30 June 2012 are reported in accordance with national key performance indicators. Results There were increases in occasions of service (from 21 218 to 33 753), most notably in primary health care services provided to very remote outlying communities (from 863 to 11 338). Health assessment uptake increased from 13% of the eligible population to 61%, leading to 73% of those identified with diabetes being placed on a care plan. Quality-of-care indicators (glycated haemoglobin checks and proportion of people with diabetics receiving antihypertensives) showed improvements over the 6-year study period, and there was also a downward trend in mortality. Conclusions This study demonstrates that strengthening primary health care services by addressing key enablers and sustainability requirements can translate into population health gains consistent with the goals underpinning the National Health Care Reform and Closing the Gap policies, and may potentially reduce health inequity for remote-living Aboriginal Australians.

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. [Fitzpatrick JP, Latimer J, Ferreira ML, Carter M, Oscar J, Martiniuk ALC, Watkins RE, Elliott EJ. Prevalence and patterns of alcohol use in pregnancy in remote Western Australian communities: The Lililwan Project. Drug Alcohol Rev 2015]

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.

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.

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.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.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.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.

Background Researchers are required to seek consent from Indigenous communities prior to conducting research but there is inadequate information about how Indigenous people understand and become fully engaged with this consent process. Few studies evaluate the preference or understanding of the consent process for research with Indigenous populations. Lack of informed consent can impact on research findings. Methods The Picture Talk Project was initiated with senior Aboriginal leaders of the Fitzroy Valley community situated in the far north of Western Australia. Aboriginal people were interviewed about their understanding and experiences of research and consent processes. Transcripts were analysed using NVivo10 software with an integrated method of inductive and deductive coding and based in grounded theory. Local Aboriginal interpreters validated coding. Major themes were defined and supporting quotes sourced. Results Interviews with Aboriginal leaders (n = 20) were facilitated by a local Aboriginal Community Navigator who could interpret if necessary and provide cultural guidance. Participants were from all four major local language groups of the Fitzroy Valley; aged 31 years and above; and half were male. Themes emerging from these discussions included Research—finding knowledge; Being respectful of Aboriginal people, Working on country, and Being flexible with time; Working together with good communication; Reciprocity—two-way learning; and Reaching consent. Conclusion The project revealed how much more there is to be learned about how research with remote Aboriginal communities should be conducted such that it is both culturally respectful and, importantly, meaningful for participants. We identify important elements in community consultation about research and seeking consent. Electronic supplementary material The online version of this article (doi:10.1186/s12910-017-0191-z) contains supplementary material, which is available to authorized users.

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.

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

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.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.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.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.

Objectives To assess the safety of a cardiac rehabilitation program for older women with Congestive Heart Failure (CHF) and determine if certain factors influence adherence.

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.

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.

IntroductionWhile research highlights the benefits of early diagnosis and intervention for children with fetal alcohol spectrum disorders (FASD), there are limited data documenting effective interventions for Australian children living in remote communities.Methods and analysisThis self-controlled cluster randomised trial is evaluating the effectiveness of an 8-week Alert Program school curriculum for improving self-regulation and executive function in children living in remote Australian Aboriginal communities. Children in grades 1–6 attending any of the eight participating schools across the Fitzroy Valley in remote North-West Australia (N≈ 363) were invited to participate. Each school was assigned to one of four clusters with clusters randomly assigned to receive the intervention at one of four time points. Clusters two, three and four had extended control conditions where students received regular schooling before later receiving the intervention. Trained classroom teachers delivered the Alert Program to students in discrete, weekly, 1-hour lessons. Student outcomes were assessed at three time points. For the intervention condition, data collection occurred 2 weeks immediately before and after the intervention, with a follow-up 8 weeks later. For control conditions in clusters two to four, the control data collection matched that of the data collection for the intervention condition in the preceding cluster. The primary outcome is change in self-regulation. FASD diagnoses will be determined via medical record review after the completion of data collection. The results will be analysed using generalised linear mixed modelling and reported in accordance with Consolidated Standards of Reporting Trials (CONSORT) guidelines.Ethics and disseminationEthical approval was obtained from the University of Western Australia (WA) (RA/4/1/7234), WA Aboriginal Health Ethics Committee (601) and WA Country Health Service (2015:04). The Kimberley Aboriginal Health Planning Forum Research Sub-Committee and WA Department of Education also provided approval. The results will be disseminated through peer-reviewed journals, conference presentations, the media and at forums.Trial registration numberACTRN12615000733572; Pre-results.

A growing number of Scottish education authorities are providing intranet technology to schools. This article is based on grounded research investigating the role of the school librarian within an intranet environment. The evidence suggests that despite a lack of expectation by school library services and authority intranet officers, school librarians are taking on roles of intranet building, management, and content creation. It appears that far from distancing librarians from traditional areas of interest, their involvement in the intranet has promoted their relationship with whole-school resourcing and literacy support. Despite evidence that recent graduates are more likely to take on roles with the intranet, it is shown that a key factor is the attitude of the librarian and linking of the intranet to resource provision.

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.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.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.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].

Introduction The objective of this study was to identify the key enablers of change in re-orienting a remote acute care model to comprehensive primary healthcare delivery. The setting of the study was a 12-bed hospital in Fitzroy Crossing, Western Australia. Methods Individual key informant, in-depth interviews were completed with five of six identified senior leaders involved in the development of the Fitzroy Valley Health Partnership. Interviews were recorded and transcripts were thematically analysed by two investigators for shared views about the enabling factors strengthening primary healthcare delivery in a remote region of Australia. Results Participants described theestablishment of a culturally relevant primary healthcare service, using a community-driven, 'bottom up' approach characterised by extensive community participation. The formal partnership across the government and community controlled health services was essential, both to enable change to occur and to provide sustainability in the longer term. A hierarchy of major themes emerged. These included community participation, community readiness and desire for self-determination; linkages in the form of a government community controlled health service partnership; leadership; adequate infrastructure; enhanced workforce supply; supportive policy; and primary healthcare funding. Conclusions The strong united leadership shown by the community and the health service enabled barriers to be overcome and it maximised the opportunities provided by government policy changes. The concurrent alignment around a common vision enabled implementation of change. The key principle learnt from this study is the importance of community and health service relationships and local leadership around a shared vision for the re-orientation of community health services.

[Extract] This study site is an acute-care 12 bed hospital situated in remote north-west Western Australia and which services around 3500 residents. Sixty per cent of the township population is Aboriginal, increasing to 100% in the catchment region. Community access to health care is via the Hospital Emergency Department (ED) generating a high volume of Triage Level 4 (Semi-urgent) and Level 5 (Non-urgent) cases into an acute-care system.

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.

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 (Stromland) PFL norms provide the best fit for Australian Aboriginal children.

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.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.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.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.

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.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.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%).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.

Three major perspectives emerge when the discussion of the implications of genetic testing on the insurance industry commences. One viewpoint, strongly advocated by certain consumer groups and ethicists on the basis of societal responsibility, categorically denies any necessity for connecting the results of genetic testing and issuance of insurance. By contrast, the insurance industry, upon examining the economics and dynamics of participation in voluntary insurance markets, lives in fear of a world filled with asymmetrical information (counter to the axioms for competitive markets), adverse selection (action by the insured as a result of asymmetric information to the perceived economic disadvantage of the insurer), and ultimately even the possibility of potential market failure or insurance company insolvency. An actuarial perspective considering the benefits (to the insurer) of this new genetic information concentrates primarily on the possibility of developing improved quantitative assessments...