Which reference equation should we use for interpreting spirometry values for First Nations Australians? A cross-sectional study.

OBJECTIVES: To evaluate the suitability of the Global Lung Function Initiative (GLI)-2012 other/mixed and GLI-2022 global reference equations for evaluating the respiratory capacity of First Nations Australians. DESIGN, SETTING: Cross-sectional study; analysis of spirometry data collected by three prospective studies in Queensland, the Northern Territory, and Western Australia between March 2015 and December 2022. PARTICIPANTS: Opportunistically recruited First Nations participants in the Indigenous Respiratory Reference Values study (Queensland, Northern Territory; age, 3-25 years; 18 March 2015 - 24 November 2017), the Healthy Indigenous Lung Function Testing in Adults study (Queensland, Northern Territory; 18 years or older; 14 August 2019 - 15 December 2022) and the Many Healthy Lungs study (Western Australia; five years or older; 10 October 2018 - 7 November 2021). MAIN OUTCOME MEASURES: Goodness of fit to spirometry data for each GLI reference equation, based on mean Z-score and its standard deviation, and proportions of participants with respiratory parameter values within 1.64 Z-scores of the mean value. RESULTS: Acceptable and repeatable forced expiratory volume in the first second (FEV1) values were available for 2700 First Nations participants in the three trials; 1467 were classified as healthy and included in our analysis (1062 children, 405 adults). Their median age was 12 years (interquartile range, 9-19 years; range, 3-91 years), 768 (52%) were female, and 1013 were tested in rural or remote areas (69%). Acceptable and repeatable forced vital capacity (FVC) values were available for 1294 of the healthy participants (88%). The GLI-2012 other/mixed and GLI-2022 global equations provided good fits to the spirometry data; the race-neutral GLI-2022 global equation better accounted for the influence of ageing on FEV1 and FVC, and of height on FVC. Using the GLI-2012 other/mixed reference equation and after adjusting for age, sex, and height, mean FEV1 (estimated difference, -0.34; 95% confidence interval [CI], -0.46 to -0.22) and FVC Z-scores (estimated difference, -0.45; 95% CI, -0.59 to -0.32) were lower for rural or remote than for urban participants, but their mean FEV1/FVC Z-score was higher (estimated difference, 0.14; 95% CI, 0.03-0.25). CONCLUSION: The normal spirometry values of healthy First Nations Australians may be substantially higher than previously reported. Until more spirometry data are available for people in urban areas, the race-neutral GLI-2022 global or the GLI-2012 other/mixed reference equations can be used when assessing the respiratory function of First Nations Australians.

"Ngany Kamam, I Speak Truly": First-Person Accounts of Aboriginal Youth Voices in Mental Health Service Reform.

Aboriginal young people are experts in their own experience and are best placed to identify the solutions to their mental health and wellbeing needs. Given that Aboriginal young people experience high rates of mental health concerns and are less likely than non-Indigenous young people to access mental health services, co-design and evaluation of appropriate mental health care is a priority. Increasing Aboriginal young people's participation in mental health service reform is key to ensuring services are culturally secure, relevant and accessible. This paper presents first-person accounts from three Aboriginal young people who worked alongside their Elders and in a positive and constructive partnership with mainstream mental health services on a three-year participatory action research project in Perth, Western Australia, in Whadjuk Nyoongar boodja (Country). The young people recount their experiences as participants and co-researchers on a systems change mental health research project and share their views on the importance of privileging Aboriginal youth voices. Their accounts highlight that Aboriginal young people's participation and leadership must be understood through a decolonising lens and that working in genuine partnership with the community is key to increasing their contact and engagement with mental health care and improving mental health and wellbeing outcomes.

"Sometimes Our Mob Don't Really Take It Serious Until It's Serious": The Experiences of Western Australian Aboriginal Adolescents Living With Type 2 Diabetes, Their Parents, and Their Family Members.

OBJECTIVES: In Australia, Aboriginal children experience disproportionate rates of type 2 diabetes (T2D) compared with non-Aboriginal children. The aim of this qualitative study was to explore the experiences of Aboriginal adolescents with T2D and their family members to better understand the influences of T2D on self-management, with findings used to inform an enhanced service model of care. METHODS: Semistructured interviews were conducted with purposively selected Western Australian Aboriginal adolescents with T2D and their parents and guardians. Interviews were transcribed verbatim and analyzed with NVivo software using interpretative thematic analysis; overarching themes were generated. RESULTS: Interviews with 24 participants, including 8 adolescents aged 11 to 16 years, were conducted across 4 regions of Western Australia. A high proportion of these adolescents were diagnosed with T2D during an unrelated hospitalization or medical appointment. Most did not fully understand or were unaware of the long-term impact of T2D. Discussions about diabetes within families did not typically occur, and shame and concealment of the diagnosis was a common finding. The parents of the adolescents described the diagnosis of T2D as compounding an already challenging set of circumstances for the family; this impacted their capacity to promote self-management activities and attend hospital and outpatient appointments. CONCLUSIONS: This study privileges the voices of Aboriginal adolescents and family members and offers insight into their personal narrative of living with T2D. Building family and community capacity to normalize preventive activities and manage T2D postdiagnosis is recommended to improve health outcomes.

Invasive Infections Caused by Lancefield Groups C/G and A Streptococcus, Western Australia, Australia, 2000-2018.

Epidemiologic data on invasive group C/G Streptococcus (iGCGS) infections are sparse internationally. Linked population-level hospital, pathology, and death data were used to describe the disease burden in Western Australia, Australia, during 2000-2018 compared with that of invasive group A Streptococcus (GAS, Streptococcus pyogenes) infections. Of 1,270 cases, 866 (68%) occurred in men. Patients with iGCGS infection were older (median age 62 years) than those with invasive GAS (median age 44 years; p<0.0001). The age and sex-adjusted incidence rate ratio by year was 1.08 (95% CI 1.07-1.09). The incidence rate ratio for Indigenous compared with non-Indigenous Australians was 3.6 (95% CI 3.0-4.3). The all-cause 90-day death rate was 9% for iGCGS infection compared with 7% for invasive GAS (p = 0.03). iGCGS infection was more common in men and older persons and had a higher death rate, perhaps reflecting the effect of age and comorbidities on incidence and death.

Investigating disparity in access to Australian clinical genetic health services for Aboriginal and Torres Strait Islander people.

Globally, there is a recognised need that all populations should be able to access the benefits of genomics and precision medicine. However, achieving this remains constrained by a paucity of data that quantifies access to clinical genomics, particularly amongst Indigenous populations. Using administrative data from clinical genetic health services across three Australian jurisdictions (states/territories), we investigate disparities in the scheduling and attendance of appointments among Aboriginal and/or Torres Strait Islander people, compared to non-Indigenous people. For 14,870 appointments scheduled between 2014-2018, adjusted Multivariate Poisson Regression models revealed that Aboriginal and/or Torres Strait Islander people were scheduled fewer appointments (IRR 0.73 [0.68-0.80], <0.001) and attended at lower rates (IRR 0.85 [0.78-0.93], <0.001). Within this population, adults, females, remote residents, and those presenting in relation to cancer or prenatal indications experienced the greatest disparity in access. These results provide important baseline data related to disparities in access to clinical genomics in Australia.

Building a Nyoongar work practice model for Aboriginal youth mental health: prioritising trust, culture and spirit, and new ways of working.

Mainstream youth mental health services struggle to comprehend the connection between colonisation and service provision for Aboriginal young people. This is the consensus agreed by Aboriginal Elders from Perth, Western Australia and young Aboriginal leaders within their communities (Wright, Culbong, Crisp, Biedermann, & Lin (2019). 1-7). What is required is a more nuanced, culturally relevant approach to both an understanding of the impact of colonisation on mental health and help-seeking behaviour if they are to provide equitable access for Aboriginal young people.In this paper, we report on a three-year participatory action research (PAR) project conducted on Whadjuk Nyoongar country in Perth, Western Australia. An innovative model of care framework developed from the project and described in this paper, focuses on key components that both inform and assist service providers in improving service provision to Aboriginal young people. The model, depicted as a tree, symbolises strength and growth, with the 'roots' of the tree, holding trust, culture and spirit. This paper details a culturally-safe co-design process that was held and directed with Elders, in partnership with young people, youth mental health service staff and youth policy staff.

Improving primary prevention of acute rheumatic fever in Australia: consensus primary care priorities identified through an eDelphi process.

OBJECTIVES: To establish the priorities of primary care providers to improve assessment and treatment of skin sores and sore throats among Aboriginal and Torres Strait Islander people at risk of acute rheumatic fever (ARF) and rheumatic heart disease (RHD). DESIGN: Modified eDelphi survey, informed by an expert focus group and literature review. SETTING: Primary care services in any one of the five Australian states or territories with a high burden of ARF. PARTICIPANTS: People working in any primary care role within the last 5 years in jurisdiction with a high burden of ARF. RESULTS: Nine people participated in the scoping expert focus group which informed identification of an access framework for subsequent literature review. Fifteen broad concepts, comprising 29 strategies and 63 different actions, were identified on this review. These concepts were presented to participants in a two-round eDelphi survey. Twenty-six participants from five jurisdictions participated, 16/26 (62%) completed both survey rounds. Seven strategies were endorsed as high priorities. Most were demand-side strategies with a focus on engaging communities and individuals in accessible, comprehensive, culturally appropriate primary healthcare. Eight strategies were not endorsed as high priority, all of which were supply-side approaches. Qualitative responses highlighted the importance of a comprehensive primary healthcare approach as standard of care rather than disease-specific strategies related to management of skin sores and sore throat. CONCLUSION: Primary care staff priorities should inform Australia's commitments to reduce the burden of RHD. In particular, strategies to support comprehensive Aboriginal and Torres Strait Islander primary care services rather than an exclusive focus on discrete, disease-specific initiatives are needed.

Searching for a technology-driven acute rheumatic fever test: the START study protocol.

INTRODUCTION: The absence of a diagnostic test for acute rheumatic fever (ARF) is a major impediment in managing this serious childhood condition. ARF is an autoimmune condition triggered by infection with group A Streptococcus. It is the precursor to rheumatic heart disease (RHD), a leading cause of health inequity and premature mortality for Indigenous peoples of Australia, New Zealand and internationally. METHODS AND ANALYSIS: 'Searching for a Technology-Driven Acute Rheumatic Fever Test' (START) is a biomarker discovery study that aims to detect and test a biomarker signature that distinguishes ARF cases from non-ARF, and use systems biology and serology to better understand ARF pathogenesis. Eligible participants with ARF diagnosed by an expert clinical panel according to the 2015 Revised Jones Criteria, aged 5-30 years, will be recruited from three hospitals in Australia and New Zealand. Age, sex and ethnicity-matched individuals who are healthy or have non-ARF acute diagnoses or RHD, will be recruited as controls. In the discovery cohort, blood samples collected at baseline, and during convalescence in a subset, will be interrogated by comprehensive profiling to generate possible diagnostic biomarker signatures. A biomarker validation cohort will subsequently be used to test promising combinations of biomarkers. By defining the first biomarker signatures able to discriminate between ARF and other clinical conditions, the START study has the potential to transform the approach to ARF diagnosis and RHD prevention. ETHICS AND DISSEMINATION: The study has approval from the Northern Territory Department of Health and Menzies School of Health Research ethics committee and the New Zealand Health and Disability Ethics Committee. It will be conducted according to ethical standards for research involving Indigenous Australians and New Zealand Maori and Pacific Peoples. Indigenous investigators and governance groups will provide oversight of study processes and advise on cultural matters.

Co-Designing Health Service Evaluation Tools That Foreground First Nation Worldviews for Better Mental Health and Wellbeing Outcomes.

It is critical that health service evaluation frameworks include Aboriginal people and their cultural worldviews from design to implementation. During a large participatory action research study, Elders, service leaders and Aboriginal and non-Aboriginal researchers co-designed evaluation tools to test the efficacy of a previously co-designed engagement framework. Through a series of co-design workshops, tools were built using innovative collaborative processes that foregrounded Aboriginal worldviews. The workshops resulted in the development of a three-way survey that records the service experiences related to cultural safety from the perspective of Aboriginal clients, their carer/s, and the service staff with whom they work. The surveys centralise the role of relationships in client-service interactions, which strongly reflect their design from an Aboriginal worldview. This paper provides new insights into the reciprocal benefits of engaging community Elders and service leaders to work together to develop new and more meaningful ways of servicing Aboriginal families. Foregrounding relationships in service evaluations reinstates the value of human connection and people-centred engagement in service delivery which are central to rebuilding historically fractured relationships between mainstream services and Aboriginal communities. This benefits not only Aboriginal communities, but also other marginalised populations expanding the remit of mainstream services to be accessed by many.

Increasing incidence of invasive group A streptococcal disease in Western Australia, particularly among Indigenous people.

OBJECTIVE: To quantify the burden of invasive group A Streptococcus (GAS) disease in Western Australia during 2000-2018. DESIGN, SETTING: Population-based data linkage study: Hospital Morbidity Data Collection (HMDC; all WA public and private hospital records), PathWest pathology data (government-owned pathology services provider), and death registrations. PARTICIPANTS: People with invasive GAS disease, defined by an isolate from a normally sterile site (PathWest) or a hospital-based principal ICD-10-AM diagnosis code (HMDC). MAIN OUTCOME MEASURES: Incidence of invasive GAS disease; median length of hospital stay; all-cause mortality. RESULTS: We identified 2237 cases of GAS disease during 2000-2018; 1283 were in male patients (57%). 1950 cases had been confirmed by GAS isolates from normally sterile tissues (87%; including 1089 from blood [56% of cases] and 750 from tissue [38%]). The age-standardised incidence increased from 2.0 (95% CI, 1.4-2.7) cases per 100 000 population in 2000 to 9.1 (95% CI, 7.9-10.2) cases per 100 000 in 2017 (by year, adjusted for age group and sex: incidence rate ratio [IRR], 1.09; 95% CI, 1.08-1.10). Incidence was consistently higher among Indigenous than non-Indigenous Australians (year-adjusted IRR, 13.1; 95% CI, 11.3-15.1). All-cause 30-day mortality was 5% (116 deaths), and 90-day mortality 7% (156 deaths); 30-day mortality, adjusted for age group and sex, was not statistically significantly different for cases involving Indigenous or non-Indigenous patients (adjusted odds ratio, 0.8; 95% CI, 0.6-1.1). CONCLUSIONS: The incidence of invasive GAS disease in WA increased between 2000 and 2018, particularly among Indigenous Australians. Mandatory notification of invasive GAS disease would therefore be appropriate. The social determinants of differences in incidence should be addressed, and other relevant host, pathogen, and health system factors investigated.

Our journey, our story: a study protocol for the evaluation of a co-design framework to improve services for Aboriginal youth mental health and well-being.

INTRODUCTION: Mainstream Australian mental health services are failing Aboriginal young people. Despite investing resources, improvements in well-being have not materialised. Culturally and age appropriate ways of working are needed to improve service access and responsiveness. This Aboriginal-led study brings Aboriginal Elders, young people and youth mental health service staff together to build relationships to co-design service models and evaluation tools. Currently, three Western Australian youth mental health services in the Perth metropolitan area and two regional services are working with local Elders and young people to improve their capacity for culturally and age appropriate services. Further Western Australian sites will be engaged as part of research translation. METHODS AND ANALYSIS: Relationships ground the study, which utilises Indigenous methodologies and participatory action research. This involves Elders, young people and service staff as co-researchers and the application of a decolonising, strengths-based framework to create the conditions for engagement. It foregrounds experiential learning and Aboriginal ways of working to establish relationships and deepen non-Aboriginal co-researchers' knowledge and understanding of local, place-based cultural practices. Once relationships are developed, co-design workshops occur at each site directed by local Elders and young people. Co-designed evaluation tools will assess any changes to community perceptions of youth mental health services and the enablers and barriers to service engagement. ETHICS AND DISSEMINATION: The study has approval from the Kimberley Aboriginal Health Planning Forum Kimberley Research Subcommittee, the Western Australian Aboriginal Health Ethics Committee, and the Curtin University Human Research Ethics Committee. Transferability of the outcomes across the youth mental health sector will be directed by the co-researchers and is supported through Aboriginal and non-Aboriginal organisations including youth mental health services, peak mental health bodies and consumer groups. Community reports and events, peer-reviewed journal articles, conference presentations and social and mainstream media will aid dissemination.

Are outcomes for childhood leukaemia in Australia influenced by geographical remoteness and Indigenous race?

BACKGROUND: Presenting features, biology and outcome for childhood leukaemia are known to vary by ethnic origin, geographic location and socioeconomic group. This study aimed to compare presentation patterns, follow-up and clinical outcomes in Indigenous and non-Indigenous children with acute leukaemia in Australia, and to assess the impact of remoteness and area-based socioeconomic disadvantage on outcome. METHODS: A retrospective review of children aged between 1 day and 18 years who were diagnosed with acute leukaemia in South Australia (SA), Northern Territory (NT) and Western Australia (WA) between 2009 and 2018 was performed. Data were collected from children treated at the Women's and Children's Hospital, Adelaide and Perth Children's Hospital. RESULTS: Analysis of 455 children treated for acute leukaemia showed that children from remote/very remote localities had inferior overall survival (p = .004). Five-year overall survival was 91.7% (95% CI: 87.9-94.3%) for children with acute lymphoblastic leukaemia (ALL) and 69.8% (56.7-79.5%) for acute myeloid leukaemia (AML). A larger proportion of Indigenous children from SA/NT were diagnosed with AML compared to non-Indigenous children (60.0% vs. 14.4%, p = .001). Indigenous children were less likely to be enrolled on clinical trials (34.5% vs. 53.1%, p = .03) and more likely to be lost to follow-up (26.1% vs. 9.2%, p = .009). CONCLUSION: Geographic remoteness of residence is associated with inferior overall survival for Australian children with leukaemia. Indigenous children with acute leukaemia suffer from disparities in outcomes. These findings provide evidence to guide national policy in supporting appropriate resource allocation to overcome the challenges faced by children within these groups.

Prevalence and predictors of vitamin D deficiency in a nationally representative sample of Australian Aboriginal and Torres Strait Islander adults.

Vitamin D deficiency (serum 25-hydroxyvitamin D (25(OH)D) concentration <50 nmol/l) is recognised as a public health problem globally. The present study details the prevalence and predictors of vitamin D deficiency in a nationally representative sample (n 3250) of Australian Aboriginal and Torres Strait Islander adults aged ≥18 years. We used data from the 2012-2013 Australian Aboriginal and Torres Strait Islander Health Survey (AATSIHS). Serum 25(OH)D concentrations were measured by liquid chromatography-tandem MS. Survey-weighted logistic regression models were used to determine the independent predictors of vitamin D deficiency. Approximately 27 % of adult AATSIHS participants were vitamin D deficient. Vitamin D deficiency was more prevalent in remote areas (39 %) than in non-remote areas (23 %). Independent predictors of vitamin D deficiency included assessment during winter (men, adjusted OR (aOR) 5·7; 95 % CI 2·2, 14·6; women, aOR 2·2; 95 % CI 1·3, 3·8) and spring (men, aOR 3·3; 95 % CI 1·4, 7·5; women, aOR 2·6; 95 % CI 1·5, 4·5) compared with summer, and obesity (men, aOR 2·6; 95 % CI 1·2, 5·4; women, aOR 4·3; 95 % CI 2·8, 6·8) compared with healthy weight. Statistically significant associations were evident for current smokers (men only, aOR 2·0; 95 % CI 1·2, 3·4), remote-dwelling women (aOR 2·0; 95 % CI 1·4, 2·9) and university-educated women (aOR 2·4; 95 % CI 1·2, 4·8). Given the high prevalence of vitamin D deficiency in this population, strategies to maintain adequate vitamin D status through safe sun exposure and dietary approaches are needed.

Equitable Expanded Carrier Screening Needs Indigenous Clinical and Population Genomic Data.

Expanded carrier screening (ECS) for recessive monogenic diseases requires prior knowledge of genomic variation, including DNA variants that cause disease. The composition of pathogenic variants differs greatly among human populations, but historically, research about monogenic diseases has focused mainly on people with European ancestry. By comparison, less is known about pathogenic DNA variants in people from other parts of the world. Consequently, inclusion of currently underrepresented Indigenous and other minority population groups in genomic research is essential to enable equitable outcomes in ECS and other areas of genomic medicine. Here, we discuss this issue in relation to the implementation of ECS in Australia, which is currently being evaluated as part of the national Government's Genomics Health Futures Mission. We argue that significant effort is required to build an evidence base and genomic reference data so that ECS can bring significant clinical benefit for many Aboriginal and/or Torres Strait Islander Australians. These efforts are essential steps to achieving the Australian Government's objectives and its commitment "to leveraging the benefits of genomics in the health system for all Australians." They require culturally safe, community-led research and community involvement embedded within national health and medical genomics programs to ensure that new knowledge is integrated into medicine and health services in ways that address the specific and articulated cultural and health needs of Indigenous people. Until this occurs, people who do not have European ancestry are at risk of being, in relative terms, further disadvantaged.

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

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

Delivering Elder- and Community-Led Aboriginal Early Childhood Development Research: Lessons from the Ngulluk Koolunga Ngulluk Koort Project.

Elder- and community-led research processes are increasingly being acknowledged as critical for successful Aboriginal health and wellbeing research. This article provides an overview of the methodologies, methods and progress of the Ngulluk Koolunga Ngulluk Koort (Our Children, Our Heart) project-an Elder- and community-led research and research-translation project focused on the early childhood development of Australian Aboriginal children in an urban context (Perth, Western Australia). We describe the application of a participatory action research methodology that is grounded in Aboriginal worldview(s), from the collaborative development of the original idea to the post-funding processes of co-design and implementation, data collection, analysis, interpretation and translation.

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

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

Epidemiology of gastrostomy insertion for children and adolescents with intellectual disability.

The largest group of recipients of pediatric gastrostomy have neurological impairment with intellectual disability (ID). This study investigated trends in first gastrostomy insertion according to markers of disadvantage and ID etiology. Linked administrative and health data collected over a 32-year study period (1983-2014) for children with ID born between 1983 and 2009 in Western Australia were examined. The annual incidence rate change over calendar year was calculated for all children and according to socioeconomic status, geographical remoteness, and Aboriginality. The most likely causes of ID were identified using available diagnosis codes in the linked data set. Of 11,729 children with ID, 325 (2.8%) received a first gastrostomy within the study period. The incidence rate was highest in the 0-2 age group and there was an increasing incidence trend with calendar time for each age group under 6 years of age. This rate change was greatest in children from the lowest socioeconomic status quintile, who lived in regional/remote areas or who were Aboriginal. The two largest identified groups of ID were genetically caused syndromes (15.1%) and neonatal encephalopathy (14.8%).Conclusion: Gastrostomy is increasingly used in multiple neurological conditions associated with ID, with no apparent accessibility barriers in terms of socioeconomic status, remoteness, or Aboriginality. What is Known: • The use of gastrostomy insertion in pediatrics is increasing and the most common recipients during childhood have neurological impairment, most of whom also have intellectual disability (ID). What is New: • Nearly 3% of children with ID had gastrostomy insertion performed, with the highest incidence in children under 3 years of age. • Gastrostomy use across different social groups was equitable in the Australian setting.