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1.  Challenges and strategies for cohort retention and data collection in an indigenous population: Australian Aboriginal Birth Cohort 
Background
Longitudinal prospective birth cohort studies are pivotal to identifying fundamental causes and determinants of disease and health over the life course. There is limited information about the challenges, retention, and collection strategies in the study of Indigenous populations. The aim is to describe the follow-up rates of an Australian Aboriginal Birth Cohort study and how they were achieved.
Methods
Participants were 686 babies enrolled between January 1987 and March 1990, born to a mother recorded in the Delivery Suite Register of the Royal Darwin Hospital (RDH) as a self-identified Aboriginal. The majority of the participants (70%) resided in Northern Territory within rural, remote and very remote Aboriginal communities that maintain traditional connections to their land and culture. The Aboriginal communities are within a sparsely populated (0.2 people/ km2) area of approximately 900,000 km2 (347sq miles), with poor communication and transport infrastructures. Follow-ups collecting biomedical and lifestyle data directly from participants in over 40 locations were conducted at 11.4 years (Wave-2) and 18.2 years (Wave-3), with Wave-4 follow-up currently underway.
Results
Follow-ups at 11 and 18 years of age successfully examined 86% and 72% of living participants respectively. Strategies addressing logistic, cultural and ethical challenges are documented.
Conclusions
Satisfactory follow-up rates of a prospective longitudinal Indigenous birth cohort with traditional characteristics are possible while maintaining scientific rigor in a challenging setting. Approaches included flexibility, respect, and transparent communication along with the adoption of culturally sensitive behaviours. This work should inform and assist researchers undertaking or planning similar studies in Indigenous and developing populations.
doi:10.1186/1471-2288-14-31
PMCID: PMC3942517  PMID: 24568142
Epidemiological method; Prospective longitudinal cohort; Ethnic minority; Health determinants; Australian; Aboriginal
2.  Oral health investigations of indigenous participants in remote settings: a methods paper describing the dental component of wave III of an Australian Aboriginal birth cohort study 
BMC Oral Health  2008;8:24.
Background
A prospective Aboriginal Birth Cohort (ABC) study has been underway in Australia's Northern Territory since 1987. Inclusion of oral epidemiological information in a follow-up study required flexible and novel approaches with unconventional techniques. Documenting these procedures may be of value to researchers interested in including oral health components in remotely-located studies. The objectives are to compare and describe dental data collection methods in wave III of the ABC study with a more conventional oral health investigation.
Methods
The Australian National Survey of Adult Oral Health (NSAOH) was considered the 'conventional' study. Differences between this investigation and the dental component of the ABC study were assessed in terms of ethics, location, recruitment, consent, privacy, equipment, examination, clinical data collection and replication. In the ABC study, recording of clinical data by different voice recording techniques were described and assessed for ease-of-use portability, reliability, time-efficiency and cost-effectiveness.
Results
Conventional investigation recruitment was by post and telephone. Participants self presented. Examinations took place in dental clinics, using customised dental chairs with standard dental lights attached. For all examinations, a dental assistant recorded dental data directly onto a laptop computer. By contrast, follow-up of ABC study participants involved a multi-phase protocol with reliance on locally-employed Indigenous advocates bringing participants to the examination point. Dental examinations occurred in settings ranging from health centre clinic rooms to improvised spaces outdoors. The dental chair was a lightweight, portable reclining camp chair and the dental light a fire-fighter's head torch with rechargeable batteries. The digital voice recorder was considered the most suitable instrument for clinical dental data collection in the ABC study in comparison with computer-based voice-recording software.
Conclusion
Oral health examinations among indigenous populations residing in predominantly remote locations are more logistically challenging than are surveys of the general population. However, lack of resources or conventional clinical infrastructures need not compromise the collection of dental data in such studies. Instead, there is a need to be flexible and creative in establishing culturally-sensitive environments with available resources, and to consider non-conventional approaches to data gathering.
doi:10.1186/1472-6831-8-24
PMCID: PMC2527296  PMID: 18702826
3.  An Australian Aboriginal birth cohort: a unique resource for a life course study of an Indigenous population. A study protocol 
Background
The global rise of Type 2 diabetes and its complications has drawn attention to the burden of non-communicable diseases on populations undergoing epidemiological transition. The life course approach of a birth cohort has the potential to increase our understanding of the development of these chronic diseases. In 1987 we sought to establish an Australian Indigenous birth cohort to be used as a resource for descriptive and analytical studies with particular attention on non-communicable diseases. The focus of this report is the methodology of recruiting and following-up an Aboriginal birth cohort of mobile subjects belonging to diverse cultural and language groups living in a large sparsely populated area in the Top End of the Northern Territory of Australia.
Methods
A prospective longitudinal study of Aboriginal singletons born at the Royal Darwin Hospital 1987–1990, with second wave cross-sectional follow-up examination of subjects 1998–2001 in over 70 different locations. A multiphase protocol was used to locate and collect data on 686 subjects with different approaches for urban and rural children. Manual chart audits, faxes to remote communities, death registries and a full time subject locator with past experience of Aboriginal communities were all used.
Discussion
The successful recruitment of 686 Indigenous subjects followed up 14 years later with vital status determined for 95% of subjects and examination of 86% shows an Indigenous birth cohort can be established in an environment with geographic, cultural and climatic challenges. The high rates of recruitment and follow up indicate there were effective strategies of follow-up in a supportive population.
doi:10.1186/1472-698X-3-1
PMCID: PMC152651  PMID: 12659639
4.  Breastfeeding Duration and Residential Isolation amid Aboriginal Children in Western Australia 
Nutrients  2012;4(12):2020-2034.
Objectives: To examine factors that impact on breastfeeding duration among Western Australian Aboriginal children. We hypothesised that Aboriginal children living in remote locations in Western Australia were breastfed for longer than those living in metropolitan locations. Methods: A population-based cross-sectional survey was conducted from 2000 to 2002 in urban, rural and remote settings across Western Australia. Cross-tabulations and multivariate logistic regression analyses were performed, using survey weights to produce unbiased estimates for the population of Aboriginal children. Data on demographic, maternal and infant characteristics were collected from 3932 Aboriginal birth mothers about their children aged 0–17 years (representing 22,100 Aboriginal children in Western Australia). Results: 71% of Aboriginal children were breastfed for three months or more. Accounting for other factors, there was a strong gradient for breastfeeding duration by remoteness, with Aboriginal children living in areas of moderate isolation being 3.2 times more likely to be breastfed for three months or more (p < 0.001) compared to children in metropolitan Perth. Those in areas of extreme isolation were 8.6 times more likely to be breastfed for three months or longer (p < 0.001). Conclusions: Greater residential isolation a protective factor linked to longer breastfeeding duration for Aboriginal children in our West Australian cohort.
doi:10.3390/nu4122020
PMCID: PMC3546620  PMID: 23363997
breastfeeding duration; Australian Aboriginal children; isolation
5.  Incidence of type 2 diabetes in Aboriginal Australians: an 11-year prospective cohort study 
BMC Public Health  2010;10:487.
Background
Diabetes is an important contributor to the health inequity between Aboriginal and non-Aboriginal Australians. This study aims to estimate incidence rates of diabetes and to assess its associations with impaired fasting glucose (IFG) and impaired glucose tolerance (IGT) among Aboriginal participants in a remote community.
Methods
Six hundred and eighty six (686) Aboriginal Australians aged 20 to 74 years free from diabetes at baseline were followed for a median of 11 years. During the follow-up period, new diabetes cases were identified through hospital records. Cox proportional hazards models were used to assess relationships of the incidence rates of diabetes with IFG, IGT and body mass index (BMI).
Results
One hundred and twenty four (124) new diabetes cases were diagnosed during the follow up period. Incidence rates increased with increasing age, from 2.2 per 1000 person-years for those younger than 25 years to 39.9 per 1000 person-years for those 45-54 years. By age of 60 years, cumulative incidence rates were 49% for Aboriginal men and 70% for Aboriginal women. The rate ratio for developing diabetes in the presence of either IFG or IGT at baseline was 2.2 (95% CI: 1.5, 3.3), adjusting for age, sex and BMI. Rate ratios for developing diabetes were 2.2 (95% CI: 1.4, 3.5) for people who were overweight and 4.7 (95% CI: 3.0, 7.4) for people who were obese at baseline, with adjustment of age, sex and the presence of IFG/IGT.
Conclusions
Diabetes incidence rates are high in Aboriginal people. The lifetime risk of developing diabetes among Aboriginal men is one in two, and among Aboriginal women is two in three. Baseline IFG, IGT and obesity are important predictors of diabetes.
doi:10.1186/1471-2458-10-487
PMCID: PMC2931471  PMID: 20712905
6.  Inequalities in ventilation tube insertion procedures between Aboriginal and non-Aboriginal children in New South Wales, Australia: a data linkage study 
BMJ Open  2013;3(11):e003807.
Objectives
Australian Aboriginal children experience earlier, more frequent and more severe otitis media, particularly in remote communities, than non-Aboriginal children. Insertion of ventilation tubes is the main surgical procedure for otitis media. Our aim was to quantify inequalities in ventilation tube insertion (VTI) procedures between Australian Aboriginal and non-Aboriginal children, and to explore the influence of birth characteristics, socioeconomic background and geographical remoteness on this inequality.
Design
Retrospective cohort study using linked hospital and mortality data from July 2000 to December 2008.
Setting and participants
A whole-of-population cohort of 653 550 children (16 831 Aboriginal and 636 719 non-Aboriginal) born in a New South Wales hospital between 1 July 2000 and 31 December 2007 was included in the analysis.
Outcome measure
First VTI procedure.
Results
VTI rates were lower in Aboriginal compared with non-Aboriginal children (incidence rate (IR), 4.3/1000 person-years; 95% CI 3.8 to 4.8 vs IR 5.8/1000 person-years; 95% CI 5.7 to 5.8). Overall, Aboriginal children were 28% less likely than non-Aboriginal children to have ventilation tubes inserted (age-adjusted and sex-adjusted rate ratios (RRs) 0.72; 95% CI 0.64 to 0.80). After adjusting additionally for geographical remoteness, Aboriginal children were 19% less likely to have ventilation tubes inserted (age-adjusted and sex-adjusted RR 0.81; 95% CI 0.73 to 0.91). After adjusting separately for private patient/health insurance status and area socioeconomic status, there was no significant difference (age-adjusted and sex-adjusted RR 0.96; 95% CI 0.86 to 1.08 and RR 0.93; 95% CI 0.83 to 1.04, respectively). In the fully adjusted model, there were no significant differences in VTI rates between Aboriginal and non-Aboriginal children (RR 1.06; 95% CI 0.94 to 1.19).
Conclusions
Despite a much higher prevalence of otitis media, Aboriginal children were less likely to receive VTI procedures than their non-Aboriginal counterparts; this inequality was largely explained by differences in socioeconomic status and geographical remoteness.
doi:10.1136/bmjopen-2013-003807
PMCID: PMC3845074  PMID: 24285631
Epidemiology; Public Health
7.  Exploration of the beliefs and experiences of Aboriginal people with cancer in Western Australia: a methodology to acknowledge cultural difference and build understanding 
Background
Aboriginal Australians experience poorer outcomes, and are 2.5 times more likely to die from cancer than non-Aboriginal people, even after adjustment for stage of diagnosis, cancer treatment and comorbidities. They are also less likely to present early as a result of symptoms and to access treatment. Psycho-social factors affect Aboriginal people's willingness and ability to participate in cancer-related screening and treatment services, but little exploration of this has occurred within Australia to date. The current research adopted a phenomenological qualitative approach to understand and explore the lived experiences of Aboriginal Australians with cancer and their beliefs and understanding around this disease in Western Australia (WA). This paper details considerations in the design and process of conducting the research.
Methods/Design
The National Health and Medical Research Council (NHMRC) guidelines for ethical conduct of Aboriginal research were followed. Researchers acknowledged the past negative experiences of Aboriginal people with research and were keen to build trust and relationships prior to conducting research with them. Thirty in-depth interviews with Aboriginal people affected by cancer and twenty with health service providers were carried out in urban, rural and remote areas of WA. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers. NVivo7 software was used to assist data management and analysis. Participants' narratives were divided into broad categories to allow identification of key themes and discussed by the research team.
Discussion and conclusion
Key issues specific to Aboriginal research include the need for the research process to be relationship-based, respectful, culturally appropriate and inclusive of Aboriginal people. Researchers are accountable to both participants and the wider community for reporting their findings and for research translation so that the research outcomes benefit the Aboriginal community. There are a number of factors that influence whether the desired level of engagement can be achieved in practice. These include the level of resourcing for the project and the researchers' efforts to ensure dissemination and research translation; and the capacity of the Aboriginal community to engage with research given other demands upon their time.
doi:10.1186/1471-2288-9-60
PMCID: PMC2743702  PMID: 19674484
8.  Use of health services by remote dwelling Aboriginal infants in tropical northern Australia: a retrospective cohort study 
BMC Pediatrics  2012;12:19.
Background
Australia is a wealthy developed country. However, there are significant disparities in health outcomes for Aboriginal infants compared with other Australian infants. Health outcomes tend to be worse for those living in remote areas. Little is known about the health service utilisation patterns of remote dwelling Aboriginal infants. This study describes health service utilisation patterns at the primary and referral level by remote dwelling Aboriginal infants from northern Australia.
Results
Data on 413 infants were analysed. Following birth, one third of infants were admitted to the regional hospital neonatal nursery, primarily for preterm birth. Once home, most (98%) health service utilisation occurred at the remote primary health centre, infants presented to the centre about once a fortnight (mean 28 presentations per year, 95%CI 26.4-30.0). Half of the presentations were for new problems, most commonly for respiratory, skin and gastrointestinal symptoms. Remaining presentations were for reviews or routine health service provision. By one year of age 59% of infants were admitted to hospital at least once, the rate of hospitalisation per infant year was 1.1 (95%CI 0.9-1.2).
Conclusions
The hospitalisation rate is high and admissions commence early in life, visits to the remote primary health centre are frequent. Half of all presentations are for new problems. These findings have important implications for health service planning and delivery to remote dwelling Aboriginal families.
doi:10.1186/1471-2431-12-19
PMCID: PMC3384247  PMID: 22373262
9.  Risk indicators for severe impaired oral health among indigenous Australian young adults 
BMC Oral Health  2010;10:1.
Background
Oral health impairment comprises three conceptual domains; pain, appearance and function. This study sought to: (1) estimate the prevalence of severe oral health impairment as assessed by a summary oral health impairment measure, including aspects of dental pain, dissatisfaction with dental appearance and difficulty eating, among a birth cohort of Indigenous Australian young adults (n = 442, age range 16-20 years); (2) compare prevalence according to demographic, socio-economic, behavioural, dental service utilisation and oral health outcome risk indicators; and (3) ascertain the independent contribution of those risk indicators to severe oral health impairment in this population.
Methods
Data were from the Aboriginal Birth Cohort (ABC) study, a prospective longitudinal investigation of Aboriginal individuals born 1987-1990 at an Australian regional hospital. Data for this analysis pertained to Wave-3 of the study only. Severe oral health impairment was defined as reported experience of toothache, poor dental appearance and food avoidance in the last 12 months. Logistic regression models were used to evaluate effects of demographic, socio-economic, behavioural, dental service utilisation and clinical oral disease indicators on severe oral health impairment. Effects were quantified as odds ratios (OR).
Results
The percent of participants with severe oral health impairment was 16.3 (95% CI 12.9-19.7). In the multivariate model, severe oral health impairment was associated with untreated dental decay (OR 4.0, 95% CI 1.6-9.6). In addition to that clinical indicator, greater odds of severe oral health impairment were associated with being female (OR 2.0, 95% CI 1.2-3.6), being aged 19-20 years (OR 2.1, 95% CI 1.2-3.6), soft drink consumption every day or a few days a week (OR 2.6, 95% 1.2-5.6) and non-ownership of a toothbrush (OR 1.9, 95% CI 1.1-3.4).
Conclusions
Severe oral health impairment was prevalent among this population. The findings suggest that public health strategies that address prevention and treatment of dental disease, self-regulation of soft drink consumption and ownership of oral self-care devices are needed if severe oral health impairment among Indigenous Australian young adults is to be reduced.
doi:10.1186/1472-6831-10-1
PMCID: PMC2827466  PMID: 20102640
10.  Anthropometric predictors of gestational hypertensive disorders in a remote aboriginal community: a nested case–control study 
BMC Research Notes  2014;7:122.
Background
Australian Aboriginal women tend to have body shape and pregnancy risk profiles different from other Australian women. This study aims to examine the associations of anthropometric indices with gestational hypertensive disorders (GHD), and to determine the index that can best predict the risk of this condition occurring during pregnancy.
Methods
This is a nested case–control study. Baseline body mass index (BMI), waist circumference (WC), hip circumference (HC), waist-to-hip ratio (WHR) and waist-to-height ratio (WHtR) were measured as part of a broader health screening program between 1992 and 1995 in a remote Aboriginal community. All subsequent pregnancies among the original participants were identified during 20 year follow-up period through hospital records (up to May 2012). Twenty eight women were diagnosed as having GHD, each of whom were individually matched by age at baseline with five women who were hospitalised for other pregnancy-related conditions and were free from GHD (n = 140). The associations of the baseline anthropometric measurements with GHD were assessed using conditional logistic regression.
Results
The best predictor of GHD was WC (OR = 1.8; (95% CI, 1.1-2.9) for one standard deviation increase in WC), followed by BMI with the corresponding OR = 1.7 (95% CI, 1.1- 2.6). Other measurements, HC, WHR, and WHtR, were also positively associated with GHD, but those associations were not statistically significant.
Conclusions
WC and BMI prior to pregnancy are anthropometric predictors of GHD in Aboriginal women, and WC is the best predictor. These findings imply the importance of early weight control in preventing GHD in Aboriginal women.
doi:10.1186/1756-0500-7-122
PMCID: PMC3946005  PMID: 24593885
Gestational hypertensive disorders; BMI; Waist circumference; Aboriginal women
11.  Absent otoacoustic emissions predict otitis media in young Aboriginal children: A birth cohort study in Aboriginal and non-Aboriginal children in an arid zone of Western Australia 
BMC Pediatrics  2008;8:32.
Background
Otitis media (OM) is the most common paediatric illness for which antibiotics are prescribed. In Australian Aboriginal children OM is frequently asymptomatic and starts at a younger age, is more common and more likely to result in hearing loss than in non-Aboriginal children. Absent transient evoked otoacoustic emissions (TEOAEs) may predict subsequent risk of OM.
Methods
100 Aboriginal and 180 non-Aboriginal children in a semi-arid zone of Western Australia were followed regularly from birth to age 2 years. Tympanometry was conducted at routine field follow-up from age 3 months. Routine clinical examination by an ENT specialist was to be done 3 times and hearing assessment by an audiologist twice. TEOAEs were measured at ages <1 and 1–2 months. Cox proportional hazards model was used to investigate the association between absent TEOAEs and subsequent risk of OM.
Results
At routine ENT specialist clinics, OM was detected in 55% of 184 examinations in Aboriginal children and 26% of 392 examinations in non-Aboriginal children; peak prevalence was 72% at age 5–9 months in Aboriginal children and 40% at 10–14 months in non-Aboriginal children. Moderate-severe hearing loss was present in 32% of 47 Aboriginal children and 7% of 120 non-Aboriginal children aged 12 months or more.
TEOAE responses were present in 90% (46/51) of Aboriginal children and 99% (120/121) of non-Aboriginal children aged <1 month and in 62% (21/34) and 93% (108/116), respectively, in Aboriginal and non-Aboriginal children at age 1–2 months. Aboriginal children who failed TEOAE at age 1–2 months were 2.6 times more likely to develop OM subsequently than those who passed.
Overall prevalence of type B tympanograms at field follow-up was 50% (n = 78) in Aboriginal children and 20% (n = 95) in non-Aboriginal children.
Conclusion
The burden of middle ear disease is high in all children, but particularly in Aboriginal children, one-third of whom suffer from moderate-severe hearing loss. In view of the frequently silent nature of OM, every opportunity must be taken to screen for OM. Measurement of TEOAEs at age 1–2 months to identify children at risk of developing OM should be evaluated in a routine health service setting.
doi:10.1186/1471-2431-8-32
PMCID: PMC2538518  PMID: 18755038
12.  Hospitalisation for gastroenteritis in Western Australia 
Archives of Disease in Childhood  2004;89(8):768-772.
Aims: To document gastroenteritis hospitalisations of the 1995–96 cohort of infants born in Western Australia to mid-2002, and to assess factors associated with their hospitalisations and readmissions.
Methods: Retrospective analysis of the State's hospitalisation data, Midwives' Notification of Births data, the Australian Bureau of Statistics mortality data and clinical and demographic information.
Results: Aboriginal infants were hospitalised for gastroenteritis eight times more frequently than their non-Aboriginal peers, and were readmitted more frequently and sooner for diarrhoeal illnesses than the other group. They also stayed in hospital for twice as long and many Aboriginal patients were hospitalised on numerous occasions. Hospitalisation rates were higher in remote areas and were significantly associated with co-morbidities such as undernutrition, anaemia, co-existing infections, and intestinal carbohydrate intolerance.
Conclusions: Gastroenteritis is very prevalent in Australian Aboriginal infants and children and is a major cause of their hospitalisation in Western Australia. It is often associated with undernutrition, anaemia, intestinal parasitic infestations, other infections, intestinal carbohydrate intolerance, and, in some instances, with low birth weight. This is often due to unhygienic living conditions and behaviours and presents major challenges to public health, health promotion, and clinical personnel, particularly paediatric services. Childhood diarrhoeal diseases occur commonly in other indigenous groups but have not received the attention that they deserve.
doi:10.1136/adc.2003.037531
PMCID: PMC1720021  PMID: 15269080
13.  Lifetime risk of developing coronary heart disease in Aboriginal Australians: a cohort study 
BMJ Open  2013;3(1):e002308.
Objectives
Lifetime risk of coronary heart disease (CHD) is an important yardstick by which policy makers, clinicians and the general public can assess and promote the awareness and prevention of CHD. The lifetime risk in Aboriginal people is not known. Using a cohort with up to 20 years of follow-up, we estimated the lifetime risk of CHD in Aboriginal people.
Design
A cohort study.
Setting
A remote Aboriginal region.
Participants
1115 Aboriginal people from one remote tribal group who were free from CHD at baseline were followed for up to 20 years.
Main outcome measures
During the follow-up period, new CHD incident cases were identified through hospital and death records. We estimated the lifetime risks of CHD with and without adjusting for the presence of competing risk of death from non-CHD causes.
Results
Participants were followed up for 17 126 person-years, during which 185 developed CHD and 144 died from non-CHD causes. The average age at which the first CHD event occurred was 48 years for men and 49 years for women. The risk of developing CHD increased with age until 60 years and then decreased with age. Lifetime cumulative risk without adjusting for competing risk was 70.7% for men and 63.8% for women. Adjusting for the presence of competing risk of death from non-CHD causes, the lifetime risk of CHD was 52.6% for men and 49.2% for women.
Conclusions
Lifetime risk of CHD is as high as one in two in both Aboriginal men and women. The average age of having first CHD events was under 50 years, much younger than that reported in non-Aboriginal populations. Our data provide useful knowledge for health education, screening and prevention of CHD in Aboriginal people.
doi:10.1136/bmjopen-2012-002308
PMCID: PMC3563122  PMID: 23370013
Epidemiology; Public Health
14.  "If you don't believe it, it won't help you": use of bush medicine in treating cancer among Aboriginal people in Western Australia 
Background
Little is known about the use of bush medicine and traditional healing among Aboriginal Australians for their treatment of cancer and the meanings attached to it. A qualitative study that explored Aboriginal Australians' perspectives and experiences of cancer and cancer services in Western Australia provided an opportunity to analyse the contemporary meanings attached and use of bush medicine by Aboriginal people with cancer in Western Australia
Methods
Data collection occurred in Perth, both rural and remote areas and included individual in-depth interviews, observations and field notes. Of the thirty-seven interviews with Aboriginal cancer patients, family members of people who died from cancer and some Aboriginal health care providers, 11 participants whose responses included substantial mention on the issue of bush medicine and traditional healing were selected for the analysis for this paper.
Results
The study findings have shown that as part of their healing some Aboriginal Australians use traditional medicine for treating their cancer. Such healing processes and medicines were preferred by some because it helped reconnect them with their heritage, land, culture and the spirits of their ancestors, bringing peace of mind during their illness. Spiritual beliefs and holistic health approaches and practices play an important role in the treatment choices for some patients.
Conclusions
Service providers need to acknowledge and understand the existence of Aboriginal knowledge (epistemology) and accept that traditional healing can be an important addition to an Aboriginal person's healing complementing Western medical treatment regimes. Allowing and supporting traditional approaches to treatment reflects a commitment by modern medical services to adopting an Aboriginal-friendly approach that is not only culturally appropriate but assists with the cultural security of the service.
doi:10.1186/1746-4269-6-18
PMCID: PMC2902429  PMID: 20569478
15.  Aboriginal birth cohort (ABC): a prospective cohort study of early life determinants of adiposity and associated risk factors among Aboriginal people in Canada 
BMC Public Health  2013;13:608.
Background
Aboriginal people living in Canada have a high prevalence of obesity, type 2 diabetes, and cardiovascular disease (CVD). To better understand the pre and postnatal influences on the development of adiposity and related cardio-metabolic factors in adult Aboriginal people, we will recruit and follow prospectively Aboriginal pregnant mothers and their children – the Aboriginal Birth Cohort (ABC) study.
Methods/design
We aim to recruit 300 Aboriginal pregnant mothers and their newborns from the Six Nations Reserve, and follow them prospectively to age 3 years. Key details of environment and health including maternal nutrition, glucose tolerance, physical activity, and weight gain will be collected. At birth, cord blood and placenta samples will be collected, as well as newborn anthropometric measurements. Mothers and offspring will be followed annually with serial measurements of diet and physical activity, growth trajectory, and adiposity.
Discussion
There is an urgent need to understand maternal and child factors that underlie the early development of adiposity and type 2 diabetes in Aboriginal people. The information generated from this cohort will assist the Six Nations community in developing interventions to prevent early adiposity in Aboriginal children.
doi:10.1186/1471-2458-13-608
PMCID: PMC3702421  PMID: 23800270
Aboriginal; Birth cohort; Early origins; Adiposity
16.  Providing culturally appropriate mental health first aid to an Aboriginal or Torres Strait Islander adolescent: development of expert consensus guidelines 
Background
It is estimated that the prevalence of mental illness is higher in Aboriginal and Torres Strait Islander adolescents compared to non-Aboriginal adolescents. Despite this, only a small proportion of Aboriginal youth have contact with mental health services, possibly due to factors such as remoteness, language barriers, affordability and cultural sensitivity issues. This research aimed to develop culturally appropriate guidelines for anyone who is providing first aid to an Australian Aboriginal or Torres Strait Islander adolescent who is experiencing a mental health crisis or developing a mental illness.
Methods
A panel of Australian Aboriginal people who are experts in Aboriginal youth mental health, participated in a Delphi study investigating how members of the public can be culturally appropriate when helping an Aboriginal or Torres Strait Islander adolescent with mental health problems. The panel varied in size across the three sequential rounds, from 37–41 participants. Panellists were presented with statements about cultural considerations and communication strategies via online questionnaires and were encouraged to suggest additional content. All statements endorsed as either Essential or Important by ≥ 90% of panel members were written into a guideline document. To assess the panel members’ satisfaction with the research method, participants were invited to provide their feedback after the final survey.
Results
From a total of 304 statements shown to the panel of experts, 194 statements were endorsed. The methodology was found to be useful and appropriate by the panellists.
Conclusion
Aboriginal and Torres Strait Islander Youth mental health experts were able to reach consensus about what the appropriate communication strategies for providing mental health first aid to an Aboriginal and Torres Strait Islander adolescent. These outcomes will help ensure that the community provides the best possible support to Aboriginal adolescents who are developing mental illnesses or are in a mental health crisis.
doi:10.1186/1752-4458-8-6
PMCID: PMC3922159  PMID: 24467923
Aboriginal; Torres Strait Islander; Adolescent; Youth; Mental illness; Mental health; Communication; Delphi method; Expert consensus; Community guidelines
17.  Mortality after admission for acute myocardial infarction in Aboriginal and non-Aboriginal people in New South Wales, Australia: a multilevel data linkage study 
BMC Public Health  2012;12:281.
Background
Heart disease is a leading cause of the gap in burden of disease between Aboriginal and non-Aboriginal Australians. Our study investigated short- and long-term mortality after admission for Aboriginal and non-Aboriginal people admitted with acute myocardial infarction (AMI) to public hospitals in New South Wales, Australia, and examined the impact of the hospital of admission on outcomes.
Methods
Admission records were linked to mortality records for 60047 patients aged 25–84 years admitted with a diagnosis of AMI between July 2001 and December 2008. Multilevel logistic regression was used to estimate adjusted odds ratios (AOR) for 30- and 365-day all-cause mortality.
Results
Aboriginal patients admitted with an AMI were younger than non-Aboriginal patients, and more likely to be admitted to lower volume, remote hospitals without on-site angiography. Adjusting for age, sex, year and hospital, Aboriginal patients had a similar 30-day mortality risk to non-Aboriginal patients (AOR: 1.07; 95% CI 0.83-1.37) but a higher risk of dying within 365 days (AOR: 1.34; 95% CI 1.10-1.63). The latter difference did not persist after adjustment for comorbid conditions (AOR: 1.12; 95% CI 0.91-1.38). Patients admitted to more remote hospitals, those with lower patient volume and those without on-site angiography had increased risk of short and long-term mortality regardless of Aboriginal status.
Conclusions
Improving access to larger hospitals and those with specialist cardiac facilities could improve outcomes following AMI for all patients. However, major efforts to boost primary and secondary prevention of AMI are required to reduce the mortality gap between Aboriginal and non-Aboriginal people.
doi:10.1186/1471-2458-12-281
PMCID: PMC3481361  PMID: 22490109
Hospital performance; Acute myocardial infarction; Ischaemic heart disease; Aboriginal health; Health outcomes; Multilevel modelling; Data linkage
18.  Early identification and preventive care for elevated cardiovascular disease risk within a remote Australian Aboriginal primary health care service 
Background
Cardiovascular disease (CVD) is the single greatest contributor to the gap in life expectancy between Indigenous and non-Indigenous Australians. Our objective is to determine if holistic CVD risk assessment, introduced as part of the new Aboriginal and Torres Strait Islander Adult Health Check (AHC), results in better identification of elevated CVD risk, improved delivery of preventive care for CVD and improvements in the CVD risk profile for Aboriginal adults in a remote community.
Methods
Interrupted time series study over six years in a remote primary health care (PHC) service involving Aboriginal adults identified with elevated CVD risk (N = 64). Several process and outcome measures were audited at 6 monthly intervals for three years prior to the AHC (the intervention) and three years following: (i) the proportion of guideline scheduled CVD preventive care services delivered, (ii) mean CVD medications prescribed and dispensed, (iii) mean PHC consultations, (iv) changes in participants' CVD risk factors and estimated absolute CVD risk and (v) mean number of CVD events and iatrogenic events.
Results
Twenty-five percent of AHC participants were identified as having elevated CVD risk. Of these, 84% had not been previously identified during routine care. Following the intervention, there were significant improvements in the recorded delivery of preventive care services for CVD (30% to 53%), and prescription of CVD related medications (28% to 89%) (P < 0.001). Amongst participants there was a 20% relative reduction in estimated absolute CVD risk (P = 0.004) following the intervention. However, there were no significant changes in the mean number of PHC consultations or mean number of CVD events or iatrogenic events.
Conclusions
Holistic CVD risk assessment during an AHC can lead to better and earlier identification of elevated CVD risk, improvement in the recorded delivery of preventive care services for CVD, intensification of treatment for CVD, and improvements in participants' CVD risk profile. Further research is required on strategies to reorient and restructure PHC services to the care of chronic illness for Aboriginal peoples in remote areas for there to be substantial progress in decreasing excess CVD related mortality.
doi:10.1186/1472-6963-11-24
PMCID: PMC3045287  PMID: 21281520
19.  Pre-pregnancy predictors of hypertension in pregnancy among Aboriginal and Torres Strait Islander women in north Queensland, Australia; a prospective cohort study 
BMC Public Health  2013;13:138.
Background
Compared to other Australian women, Indigenous women are frequently at greater risk for hypertensive disorders of pregnancy. We examined pre-pregnancy factors that may predict hypertension in pregnancy in a cohort of Aboriginal and Torres Strait Islander women in north Queensland.
Methods
Data on a cohort of 1009 Indigenous women of childbearing age (15–44 years) who participated in a 1998–2000 health screening program in north Queensland were combined with 1998–2008 Queensland hospitalisations data using probabilistic data linkage. Data on the women in the cohort who were hospitalised for birth (n = 220) were further combined with Queensland perinatal data which identified those diagnosed with hypertension in pregnancy.
Results
Of 220 women who gave birth, 22 had hypertension in the pregnancy after their health check. The mean age of women with and without hypertension was similar (23.7 years and 23.9 years respectively) however Aboriginal women were more affected compared to Torres Strait Islanders. Pre-pregnancy adiposity and elevated blood pressure at the health screening program were predictors of a pregnancy affected by hypertension. After adjusting for age and ethnicity, each 1 cm increase in waist circumference showed a 4% increased risk for hypertension in pregnancy (PR 1.04; 95% CI; 1.02-1.06); each 1 point increase in BMI showed a 9% adjusted increase in risk (1.09; 1.04-1.14). For each 1 mmHg increase in baseline systolic blood pressure there was an age and ethnicity adjusted 6% increase in risk and each 1 mmHg increase in diastolic blood pressure showed a 7% increase in risk (1.06; 1.03-1.09 and 1.07; 1.03-1.11 respectively). Among those free of diabetes at baseline, the presence of the metabolic syndrome (International Diabetes Federation criteria) predicted over a three-fold increase in age-ethnicity-adjusted risk (3.5; 1.50-8.17).
Conclusions
Pre-pregnancy adiposity and features of the metabolic syndrome among these young Aboriginal and Torres Strait Islander women track strongly to increased risk of hypertension in pregnancy with associated risks to the health of babies.
doi:10.1186/1471-2458-13-138
PMCID: PMC3599805  PMID: 23410045
Indigenous; Pre-pregnancy; Hypertension; Preeclampsia
20.  Not just bricks and mortar: planning hospital cancer services for Aboriginal people 
BMC Research Notes  2011;4:62.
Background
Aboriginal people in Australia experience higher mortality from cancer compared with non-Aboriginal Australians, despite an overall lower incidence. A notable contributor to this disparity is that many Aboriginal people do not take up or continue with cancer treatment which almost always occurs within major hospitals.
Thirty in-depth interviews with urban, rural and remote Aboriginal people affected by cancer were conducted between March 2006 and September 2007. Interviews explored participants' beliefs about cancer and experiences of cancer care and were audio-recorded, transcribed verbatim and coded independently by two researchers. NVivo7 software was used to assist data management and analysis. Information from interviews relevant to hospital services including and building design was extracted.
Findings
Relationships and respect emerged as crucial considerations of participants although many aspects of the hospital environment were seen as influencing the delivery of care. Five themes describing concerns about the hospital environment emerged: (i) being alone and lost in a big, alien and inflexible system; (ii) failure of open communication, delays and inefficiency in the system; (iii) practicalities: costs, transportation, community and family responsibilities; (iv) the need for Aboriginal support persons; and (v) connection to the community.
Conclusions
Design considerations and were identified but more important than the building itself was the critical need to build trust in health services. Promotion of cultural safety, support for Aboriginal family structures and respecting the importance of place and community to Aboriginal patients are crucial in improving cancer outcomes.
doi:10.1186/1756-0500-4-62
PMCID: PMC3068108  PMID: 21401923
21.  Factors influencing attendance in a structured physical activity program for Aboriginal and Torres Strait Islander women in an urban setting: a mixed methods process evaluation 
Background
Aboriginal and Torres Strait Islander women experience higher rates of obesity, chronic disease, and are less active than non-Indigenous Australian women. Lifestyle programs designed to increase physical activity and encourage healthy eating are needed to ameliorate this disparity. The aim of this study was to identify participants’ perceived barriers and enablers to attend group exercise classes as part of a 12-week fitness program.
Methods
To understand the factors that influence attendance, a mixed method process evaluation was undertaken in which a quantitative measure of attendance in the group exercise classes was used to identify cases for further qualitative investigation. Aboriginal and/or Torres Strait Islander women aged 18 to 64 years were recruited to a research trial of a fitness program. The 12-week program included two 60-minute group exercise classes per week, and four nutrition education workshops. Semi-structured interviews were conducted at program completion. Participants were stratified by attendance, and interviews from the highest and lowest 25 percentiles analysed. Rigour was strengthened through use of multiple data analysts, member checking and prolonged engagement in the field.
Results
Analyses of the post-program interviews revealed that participants enrolled in the program primarily for the perceived health benefits and all (with one exception) found the program met their needs and expectations. The atmosphere of classes was positive and comfortable and they reported developing good relationships with their fellow participants and program staff. Low attendees described more barriers to attendance, such as illness and competing work and family obligations, and were more likely to report logistical issues, such as inconvenient venue or class times.
Conclusions
Attendance to the ‘Aboriginal and Torres Strait Islander Women’s Fitness Program’ was primarily influenced by the participant’s personal health, logistics and competing obligations. Low attendees reported more barriers during the 12-week period and identified fewer enabling factors than high attendees.
Trial registration
Australian New Zealand Clinical Trials Registry ACTRN12610000224022
doi:10.1186/1475-9276-12-11
PMCID: PMC3561158  PMID: 23347750
Aboriginal; Torres Strait Islander; Physical activity; Women; Lifestyle program; Health promotion; Barriers; Facilitators; Participation
22.  Risk factors for elevated HIV incidence among Aboriginal injection drug users in Vancouver 
Background
Because of established links between entrenched poverty and risk of HIV infection, there have long been warnings that HIV/AIDS will disproportionately affect Aboriginal people in Canada. We compared HIV incidence rates among Aboriginal and non-Aboriginal injection drug users (IDUs) in Vancouver and studied factors associated with HIV seroconversion among Aboriginal participants.
Methods
This analysis was based on 941 participants (230 Aboriginal people) recruited between May 1996 and December 2000 who were seronegative at enrolment and had completed at least one follow-up visit. Incidence rates were calculated using the Kaplan–Meier method. The Cox proportional hazards regression model was used to identify independent predictors of time to HIV seroconversion among female and male Aboriginal IDUs.
Results
As of May 31, 2001, seroconversion had occurred in 112 (11.9%) of the participants, yielding a cumulative incidence of HIV infection at 42 months of 12.7% (95% confidence interval [CI] 10.3%–15.1%). The cumulative incidence at 42 months was significantly higher among the Aboriginal participants than among the non-Aboriginal participants (21.1% v. 10.7%, p < 0.001). This elevation in risk was present in both female and male Aboriginal IDUs. Among the female Aboriginal IDUs, frequent speedball (combined cocaine and heroin) injection (adjusted relative risk [RR] 3.1; 95% CI 1.4–7.1) and going on binges of injection drug use (adjusted RR 2.3; 95% CI 1.0–5.2) were found to be independent predictors of HIV seroconversion. Among the male Aboriginal IDUs, the independent predictors of seroconversion were frequent speedball injection (adjusted RR 2.9; 95% CI 1.0–8.5) and frequent cocaine injection (adjusted RR 2.5; 95% CI 1.0–6.5).
Interpretation
In Vancouver, Aboriginal IDUs are becoming HIV positive at twice the rate of non-Aboriginal IDUs. Our findings emphasize the urgent need for an appropriate and effective public health strategy — planned and implemented in partnership with Aboriginal AIDS service organizations and the Aboriginal community — to reduce the harms of injection drug use in this population.
PMCID: PMC139313  PMID: 12515780
23.  Enhanced reporting of deaths among Aboriginal and Torres Strait Islander peoples using linked administrative health datasets 
Background
Aboriginal and Torres Strait Islander peoples are under-reported in administrative health datasets in NSW, Australia. Correct reporting of Aboriginal and Torres Strait Islander peoples is essential to measure the effectiveness of policies and programmes aimed at reducing the health disadvantage experienced by Aboriginal and Torres Strait Islander peoples. This study investigates the potential of record linkage to enhance reporting of deaths among Aboriginal and Torres Strait Islander peoples in NSW, Australia.
Methods
Australian Bureau of Statistics death registration data for 2007 were linked with four population health datasets relating to hospitalisations, emergency department attendances and births. Reporting of deaths was enhanced from linked records using two methods, and effects on patterns of demographic characteristics and mortality indicators were examined.
Results
Reporting of deaths increased by 34.5% using an algorithm based on a weight of evidence of a person being Aboriginal or Torres Strait Islander, and by 56.6% using an approach based on 'at least one report' of a person being Aboriginal or Torres Strait Islander. The increase was relatively greater in older persons and those living in less geographically remote areas. Enhancement resulted in a reduction in the urban-remote differential in median age at death and increases in standardised mortality ratios particularly for chronic conditions.
Conclusions
Record linkage creates a statistical construct that helps to correct under-reporting of deaths and potential bias in mortality statistics for Aboriginal and Torres Strait Islander peoples.
doi:10.1186/1471-2288-12-91
PMCID: PMC3413579  PMID: 22747900
24.  “People like numbers”: a descriptive study of cognitive assessment methods in clinical practice for Aboriginal Australians in the Northern Territory 
BMC Psychiatry  2013;13:42.
Background
Achieving culturally fair assessments of cognitive functioning for Aboriginal people is difficult due to a scarcity of appropriately validated tools for use with this group. As a result, some Aboriginal people with cognitive impairments may lack fair and equitable access to services. The objective of this study was to examine current clinical practice in the Northern Territory regarding cognitive assessment for Aboriginal people thereby providing some guidance for clinicians new to this practice setting.
Method
Qualitative enquiry was used to describe practice context, reasons for assessment, and current practices in assessing cognition for Aboriginal Australians. Semi-structured interviews were conducted with 22 clinicians working with Aboriginal clients in central and northern Australia. Results pertaining to assessment methods are reported.
Results
A range of standardised tests were utilised with little consistency across clinical practice. Nevertheless, it was recognised that such tests bear severe limitations, requiring some modification and significant caution in their interpretation. Clinicians relied heavily on informal assessment or observations, contextual information and clinical judgement.
Conclusions
Cognitive tests developed specifically for Aboriginal people are urgently needed. In the absence of appropriate, validated tests, clinicians have relied on and modified a range of standardised and informal assessments, whilst recognising the severe limitations of these. Past clinical training has not prepared clinicians adequately for assessing Aboriginal clients, and experience and clinical judgment were considered crucial for fair interpretation of test scores. Interpretation guidelines may assist inexperienced clinicians to consider whether they are achieving fair assessments of cognition for Aboriginal clients.
doi:10.1186/1471-244X-13-42
PMCID: PMC3598474  PMID: 23368850
Cognition; Assessment; Cross-cultural; Testing; Indigenous; Aboriginal
25.  The Early Growth and Development Study: A Prospective Adoption Study from Birth Through Middle Childhood 
The Early Growth and Development Study is a prospective adoption study of birth parents, adoptive parents, and adopted children recruited in two cohorts (N = 561 triads). The primary study aims are to examine how family, peer, and contextual processes affect children’s adjustment, and to examine their interplay (mediation, moderation) with genetic influences. Participants were recruited through adoption agencies located throughout the United States following the birth of a child. Assessments are ongoing, in 9-month intervals until the child reaches 3 years of age and in one-year intervals thereafter through age 9. Data collection includes the following primary constructs: child temperament, social behavior, school performance, mental health, and health; birth and adoptive parent personality characteristics, mental health, competence, stress, health, context, substance use, parenting, and marital relations; and pregnancy use of drugs and maternal stress during pregnancy. DNA and salivary cortisol samples have also been collected. Analyses have indicated evidence for genotype-environment interactions during early childhood. Study procedures, sample representativeness (including tests of potential confounds in the adoption design), and an overview of findings to date are summarized, and future plans are described.
doi:10.1017/thg.2012.126
PMCID: PMC3572752  PMID: 23218244
adoption; childhood; longitudinal; genetic; parenting; birth parent

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