National notification data for sexually transmitted infections (STIs) and blood borne viruses (BBVs) continue to have a high proportion of missing data on Indigenous status, potentially biasing estimates of notification rates by Aboriginality. We evaluated the use of data linkage to improve the accuracy of estimated notification rates for STIs and BBVs in Aboriginal and non-Aboriginal groups in Western Australia.
STI and BBV case notifications in Western Australia received in 2010 were linked with administrative health data collections in Western Australia to obtain additional data on Indigenous status. STI and BBV notification rates based on the pre- and post-linkage data among Aboriginal and non-Aboriginal groups were compared.
Data linkage decreased the proportion of notifications with unknown Indigenous status by 74% from 10.2% to 2.7%. There was no significant difference in disease-specific age-adjusted notification rate ratio estimates based on pre-linkage data and post-linkage data for Aboriginal people compared with non-Aboriginal people.
Our findings suggest that reported STI and BBV disease-specific age-adjusted notification rates for 2010 in Western Australia are unlikely to be significantly biased by excluding notifications with unknown Indigenous status. This finding is likely to be dependent on recent improvements in the reporting of Indigenous status in notification data in Western Australia. Cost-effective and systematic solutions, including the better use of existing data linkage resources, are required to facilitate continued improvement in the completeness of reporting and accuracy of estimates for notifiable STIs and BBVs in Australia by Aboriginality.
The aim of this work was to determine the feasibility of improving Aboriginal and Torres Strait Islander status recording for notifiable diseases using all Invasive Pneumococcal Disease (IPD) notifications in a regional area of New South Wales, Australia.
In Australia people with IPD are nearly always admitted to hospital and their Aboriginal and Torres Strait Islander status is recorded. Aboriginal and Torres Strait Islander status was determined for IPD notifications by referring to the routine hospital admission data in a regional area of New South Wales, Australia.
There were 234 notifications in the regional area of Hunter New England during the period 2007–2009. Initially, 168 (72%) notifications had Aboriginal and Torres Strait Islander status recorded. After referring to the routine hospital admission data, the recorded status increased to 232 (99%). Updating the surveillance data required less than five minutes per notification.
Referring to routine hospital admission data proved a useful and time-efficient surveillance strategy to increase the proportion of notifications with Aboriginal and Torres Strait Islander status. These data can then be used to better understand the current epidemiology of IPD. Aboriginal and Torres Strait Islander children aged 0–4 years have a two- to threefold higher rate of invasive pneumococcal disease than non-Aboriginal children, thus high levels of timely pneumococcal immunization coverage remain important for young Aboriginal and Torres Strait Islander children.
The Indigenous population of Australia was estimated as 2.5% and under-reported. The aim of this study is to improve statistical ascertainment of Aboriginal women giving birth in New South Wales.
This study was based on linked birth data from the Midwives Data Collection (MDC) and the Registry of Births Deaths and Marriages (RBDM) of New South Wales (NSW). Data linkage was performed by the Centre for Health Record Linkage (CHeReL) for births in NSW for the period January 2001 to December 2005. The accuracy of maternal Aboriginal status in the MDC and RBDM was assessed by consistency, sensitivity and specificity. A new statistical variable, ASV, or Aboriginal Statistical Variable, was constructed based on Indigenous identification in both datasets. The ASV was assessed by comparing numbers and percentages of births to Aboriginal mothers with the estimates by capture-recapture analysis.
Maternal Aboriginal status was under-ascertained in both the MDC and RBDM. The ASV significantly increased ascertainment of Aboriginal women giving birth and decreased the number of missing cases. The proportion of births to Aboriginal mothers in the non-registered birth group was significantly higher than in the registered group.
Linking birth data collections is a feasible method to improve the statistical ascertainment of Aboriginal women giving birth in NSW. This has ramifications for the ascertainment of babies of Aboriginal mothers and the targeting of appropriate services in pregnancy and early childhood.
Birth; Aboriginality; data; Australia
Chlamydia infections are notified at much higher rates in Aboriginal and/or Torres Strait Islander people compared to non-Indigenous people. The Australian Collaboration Chlamydia Enhanced Sentinel Surveillance System (ACCESS) was established to complement population-based surveillance.
We describe patient demographics, completeness of recording of Aboriginal and/or Torres Strait Islander (‘Aboriginal’) status, chlamydia testing rates and positivity rates from the Aboriginal Community Controlled Health Service (ACCHSs), General Practice (GP) clinics and Sexual Health Services (SHSs) networks in ACCESS during 2009. Data were extracted from electronic medical records of each participating health service for consultations with patients aged 16–29 years and for chlamydia testing and positivity.
Data were included from 16–29 year olds attending six ACCHSs (n = 4,950); 22 SHSs (n = 20,691) and 25 GP clinics (n = 34,462). Aboriginal status was unknown for 79.3% of patients attending GP clinics, 4.5% attending SHSs and 3.8% of patients attending ACCHSs. Chlamydia testing rates among Aboriginal patients were 19.8% (95%CI:18.6%-21.0%) at ACCHSs, 75.5% (95% CI:72.5%-78.4%) at SHSs and 4.3% (95% CI: 2.6%-6.6%) at GP clinics. Positivity rates were highest in Aboriginal patients tested at SHSs at 22.7% (95% CI:19.5%-26.2%), followed by 15.8% (95% CI:3.8%-43.4%) at GP clinics and 8.6% at ACCHSs (95% CI:7.9%-12.4%). This compared with non-Indigenous patients positivity rates at SHSs of 12.7% (95% CI:12.2-13.2%); 8.6% (7.2%-11.3%) at GP clinics and 11.3% at ACCHSs (95% CI:15.4%-24.9%).
Higher chlamydia positivity in Aboriginal people across a range of clinical services is reflected in national notification data. Targeted efforts are required to improve testing rates in primary care services; to improve identification of Aboriginal patients in mainstream services such as GP clinics; and to better engage with young Aboriginal Australians.
Chlamydia; Aboriginal and Torres Strait Islander people; Testing; Positivity; Indigenous; Australia
Aboriginal status has been unreliably and incompletely recorded in health and vital registration data collections for the most populous areas of Australia, including NSW where 29% of Australian Aboriginal people reside. This paper reports an assessment of Aboriginal status recording in NSW cancer registrations and estimates incidence, mortality and survival from cancer in NSW Aboriginal people using multiple imputation of missing Aboriginal status in NSW Central Cancer Registry (CCR) records.
Logistic regression modelling and multiple imputation were used to assign Aboriginal status to those records of cancer diagnosed from 1999 to 2008 with missing Aboriginality (affecting 12-18% of NSW cancers registered in this period). Estimates of incidence, mortality and survival from cancer in NSW Aboriginal people were compared with the NSW total population, as standardised incidence and mortality ratios, and with the non-Aboriginal population.
Following imputation, 146 (12.2%) extra cancers in Aboriginal males and 140 (12.5%) in Aboriginal females were found for 1999-2007. Mean annual cancer incidence in NSW Aboriginal people was estimated to be 660 per 100,000 and 462 per 100,000, 9% and 6% higher than all NSW males and females respectively. Mean annual cancer mortality in NSW Aboriginal people was estimated to be 373 per 100,000 in males and 240 per 100,000 in females, 68% and 73% higher than for all NSW males and females respectively. Despite similar incidence of localised cancer, mortality from localised cancer in Aboriginal people is significantly higher than in non-Aboriginal people, as is mortality from cancers with regional, distant and unknown degree of spread at diagnosis. Cancer survival in Aboriginal people is significantly lower: 51% of males and 43% of females had died of the cancer by 5 years following diagnosis, compared to 36% and 33% of non-Aboriginal males and females respectively.
The present study is the first to produce valid and reliable estimates of cancer incidence, survival and mortality in Australian Aboriginal people from NSW. Despite somewhat higher cancer incidence in Aboriginal than in non-Aboriginal people, substantially higher mortality and lower survival in Aboriginal people is only partly explained by more advanced cancer at diagnosis.
Prison populations are known to be at high risk of sexually transmitted infections (STIs) and blood borne viruses (BBVs). In accordance with State health guidelines, the Western Australian Department of Correctional Services' policy is to offer testing for STIs and BBVs to all new prison entrants. This audit was undertaken to assess the completeness and timeliness of STI and BBV testing among recent prison entrants in Western Australia, and estimate the prevalence of STIs and BBVs on admission to prison.
A retrospective audit of prison medical records was conducted among 946 individuals admitted to prison in Western Australia after the 1st January 2005, and discharged between the 1st January and 31st December 2007 inclusive. Quota sampling was used to ensure adequate sampling of females, juveniles, and individuals from regional prisons. Main outcomes of interest were the proportion of prisoners undergoing STI and BBV testing, and the prevalence of STIs and BBVs.
Approximately half the sample underwent testing for the STIs chlamydia and gonorrhoea, and almost 40% underwent testing for at least one BBV. Completeness of chlamydia and gonorrhoea testing was significantly higher among juveniles (84.1%) compared with adults (39.8%; p < 0.001), and Aboriginal prisoners (58.3%) compared with non-Aboriginal prisoners (40.4%; p < 0.001). Completeness of BBV testing was significantly higher among adults (46.5%) compared with juveniles (15.8%; p < 0.001) and males (43.3%) compared with females (33.1%; p = 0.001). Among prisoners who underwent testing, 7.3% had a positive chlamydia test result and 24.8% had a positive hepatitis C test result.
The documented coverage of STI and BBV testing among prisoners in Western Australia is not comprehensive, and varies significantly by age, gender and Aboriginality. Given the high prevalence of STIs and BBVs among prisoners, increased test coverage is required to ensure optimal use of the opportunity that prison admission presents for the treatment and control of STIs and BBVs among this high risk group.
Despite two decades of interventions, rates of sexually transmissible infections (STI) in remote Australian Aboriginal communities remain unacceptably high. Routine notifications data from 2011 indicate rates of chlamydia and gonorrhoea among Aboriginal people in remote settings were 8 and 61 times higher respectively than in the non-Indigenous population.
STRIVE is a stepped-wedge cluster randomised trial designed to compare a sexual health quality improvement program (SHQIP) to usual STI clinical care delivered in remote primary health care services. The SHQIP is a multifaceted intervention comprising annual assessments of sexual health service delivery, implementation of a sexual health action plan, six-monthly clinical service activity data reports, regular feedback meetings with a regional coordinator, training and financial incentive payments. The trial clusters comprise either a single community or several communities grouped together based on geographic proximity and cultural ties. The primary outcomes are: prevalence of chlamydia, gonorrhoea and trichomonas in Aboriginal residents aged 16–34 years, and performance in clinical management of STIs based on best practice indicators. STRIVE will be conducted over five years comprising one and a half years of trial initiation and community consultation, three years of trial conditions, and a half year of data analysis. The trial was initiated in 68 remote Aboriginal health services in the Northern Territory, Queensland and Western Australia.
STRIVE is the first cluster randomised trial in STI care in remote Aboriginal health services. The trial will provide evidence to inform future culturally appropriate STI clinical care and control strategies in communities with high STI rates.
Australian and New Zealand Clinical Trials Registry ACTRN12610000358044
Aboriginal; Indigenous; Sexually transmitted infections; Chlamydia; Gonorrhoea; Trichomonas; Continuous quality improvement; Protocol; Prevalence; Remote
Significant variation exists in published Aboriginal mortality and life expectancy (LE) estimates due to differing and evolving methodologies required to correct for inadequate recording of Aboriginality in death data, under-counting of Aboriginal people in population censuses, and unexplained growth in the Aboriginal population attributed to changes in the propensity of individuals to identify as Aboriginal at population censuses.
The objective of this paper is to analyse variation in reported Australian Aboriginal mortality in terms of LE and infant mortality rates (IMR), compared with all Australians.
Published data for Aboriginal LE and IMR were obtained and analysed for data quality and method of estimation. Trends in reported LE and IMR estimates were assessed and compared with those in the entire Australian population.
LE estimates derived from different methodologies vary by as much as 7.2 years for the same comparison period. Indirect methods for estimating Aboriginal LE have produced LE estimates sensitive to small changes in underlying assumptions, some of which are subject to circular reasoning. Most indirect methods appear to under-estimate Aboriginal LE. Estimated LE gaps between Aboriginal people and the overall Australian population have varied between 11 and 20 years.
Latest mortality estimates, based on linking census and death data, are likely to over-estimate Aboriginal LE.
Temporal LE changes by each methodology indicate that Aboriginal LE has improved at rates similar to the Australian population overall. Consequently the gap in LE between Aboriginal people and the total Australian population appears to be unchanged since the early 1980s, and at the end of the first decade of the 21st century remains at least 11–12 years.
In contrast, focussing on the 1990–2010 period Aboriginal IMR declined steeply over 2001–08, from more than 12 to around 8 deaths per 1,000 live births, the same level as Australia overall in 1993–95. The IMR gap between Aboriginal people and the total Australian population, while still unacceptable, has declined considerably, from over 8 before 2000 to around 4 per 1,000 live births by 2008.
Regardless of estimation method used, mortality and LE gaps between Aboriginal and non-Aboriginal people are substantial, but remain difficult to estimate accurately.
To investigate variation in rates of cataract surgery in New South Wales, Australia by area of residence for Aboriginal and non-Aboriginal adults.
Observational data linkage study of hospital admissions.
Two hundred eighty-nine thousand six hundred forty-six New South Wales residents aged 30 years and over admitted to New South Wales hospitals for 444 551 cataract surgery procedures between 2001 and 2008.
Analysis of linked routinely collected hospital data using direct standardization and multilevel negative binomial regression models accounting for clustering of individuals within Statistical Local Areas.
Main Outcome Measures
Age-standardized cataract surgery rates and adjusted rate ratios.
Aboriginal people had lower rates of cataract procedures than non-Aboriginal people of the same age and sex, living in the same Statistical Local Area (adjusted rate ratio 0.71, 95% confidence interval 0.68–0.75). There was significant variation in cataract surgery rates across Statistical Local Areas for both Aboriginal and non-Aboriginal people, with the disparity greater in major cities and less disadvantaged areas. Rates of surgery were lower for Aboriginal than non-Aboriginal people in most Statistical Local Areas, but in a few, the rates were similar or higher for Aboriginal people.
Aboriginal people in New South Wales received less cataract surgery than non-Aboriginal people, despite evidence of higher cataract rates. This disparity was greatest in urban and wealthier areas. Higher rates of surgery for Aboriginal people observed in some specific locations are likely to reflect the availability of public ophthalmology services, targeted services for Aboriginal people and higher demand for surgery in these populations.
Aboriginal health; cataract surgery; data linkage; disadvantage
Acute lower respiratory infections (ALRI) are a major cause of hospitalisation in young children. Many factors can lead to increased risk of ALRI in children and predispose a child to hospitalisation, but population attributable fractions for different risk factors and how these fractions differ between Indigenous and non-Indigenous children is unknown. This study investigates population attributable fractions of known infant and maternal risk factors for ALRI to inform prevention strategies that target high-risk groups or particular risk factors.
A retrospective population-based data linkage study of 245,249 singleton births in Western Australia. Population attributable fractions of known maternal and infant risk factors for hospitalisation with ALRI between 1996 and 2005 were calculated using multiple logistic regression.
The overall ALRI hospitalisation rate was 16.1/1,000 person-years for non-Aboriginal children and 93.0/1,000 for Aboriginal children. Male gender, being born in autumn, gestational age <33 weeks, and multiple previous pregnancies were significant risk factors for ALRI in both Aboriginal and non-Aboriginal children. In non-Aboriginal children, maternal smoking during pregnancy accounted for 6.3% (95%CI: 5.0, 7.6) of the population attributable fraction for ALRI, being born in autumn accounted for 12.3% (10.8, 13.8), being born to a mother with three or more previous pregnancies accounted for 15.4% (14.1, 17.0) and delivery by elective caesarean accounted for 4.1% (2.8, 5.3). In Aboriginal children, being born to a mother with three or more previous pregnancies accounted for 16.5% (11.8, 20.9), but remote location at birth accounted for 11.7% (8.5, 14.8), maternal age <20 years accounted for 11.2% (7.8, 14.5), and being in the most disadvantaged socio-economic group accounted for 18.4% (-6.5, 37.4) of the population attributable fraction.
The population attributable fractions estimated in this study should help in guiding public health interventions to prevent ALRI. A key risk factor for all children is maternal smoking during pregnancy, and multiple previous pregnancies and autumnal births are important high-risk groups. Specific key target areas are reducing elective caesareans in non-Aboriginal women and reducing teenage pregnancies and improving access to services and living conditions for the Aboriginal population.
Asthma and chronic obstructive pulmonary disease (COPD) have considerable potential for inequities in diagnosis and treatment, thereby affecting vulnerable groups.
To evaluate differences in asthma and COPD prevalence between adult Aboriginal and non-Aboriginal populations.
MEDLINE, EMBASE, specialized databases and the grey literature up to October 2011 were searched to identify epidemiological studies comparing asthma and COPD prevalence between Aboriginal and non-Aboriginal adult populations. Prevalence ORs (PORs) and 95% CIs were calculated in a random-effects meta-analysis.
Of 132 studies, eight contained relevant data. Aboriginal populations included Native Americans, Canadian Aboriginals, Australian Aboriginals and New Zealand Maori. Overall, Aboriginals were more likely to report having asthma than non-Aboriginals (POR 1.41 [95% CI 1.23 to 1.60]), particularly among Canadian Aboriginals (POR 1.80 [95% CI 1.68 to 1.93]), Native Americans (POR 1.41 [95% CI 1.13 to 1.76]) and Maori (POR 1.64 [95% CI 1.40 to 1.91]). Australian Aboriginals were less likely to report asthma (POR 0.49 [95% CI 0.28 to 0.86]). Sex differences in asthma prevalence between Aboriginals and their non-Aboriginal counterparts were not identified. One study compared COPD prevalence between Native and non-Native Americans, with similar rates in both groups (POR 1.08 [95% CI 0.81 to 1.44]).
Differences in asthma prevalence between Aboriginal and non-Aboriginal populations exist in a variety of countries. Studies comparing COPD prevalence between Aboriginal and non-Aboriginal populations are scarce. Further investigation is needed to identify and account for factors associated with respiratory health inequalities among Aboriginal peoples.
Aboriginal; Asthma; Chronic obstructive pulmonary disease; Epidemiology; Prevalence; Systematic review
Statistical time series derived from administrative data sets form key indicators in measuring progress in addressing disadvantage in Aboriginal and Torres Strait Islander populations in Australia. However, inconsistencies in the reporting of Indigenous status can cause difficulties in producing reliable indicators. External data sources, such as survey data, provide a means of assessing the consistency of administrative data and may be used to adjust statistics based on administrative data sources.
We used record linkage between a large-scale survey (the Western Australian Aboriginal Child Health Survey), and two administrative data sources (the Western Australia (WA) Register of Births and the WA Midwives’ Notification System) to compare the degree of consistency in determining Indigenous status of children between the two sources. We then used a logistic regression model predicting probability of consistency between the two sources to estimate the probability of each record on the two administrative data sources being identified as being of Aboriginal and/or Torres Strait Islander origin in a survey. By summing these probabilities we produced model-adjusted time series of neonatal outcomes for Aboriginal and/or Torres Strait Islander births.
Compared to survey data, information based only on the two administrative data sources identified substantially fewer Aboriginal and/or Torres Strait Islander births. However, these births were not randomly distributed. Births of children identified as being of Aboriginal and/or Torres Strait Islander origin in the survey only were more likely to be living in urban areas, in less disadvantaged areas, and to have only one parent who identifies as being of Aboriginal and/or Torres Strait Islander origin, particularly the father. They were also more likely to have better health and wellbeing outcomes. Applying an adjustment model based on the linked survey data increased the estimated number of Aboriginal and/or Torres Strait Islander births in WA by around 25%, however this increase was accompanied by lower overall proportions of low birth weight and low gestational age babies.
Record linkage of survey data to administrative data sets is useful to validate the quality of recording of demographic information in administrative data sources, and such information can be used to adjust for differential identification in administrative data.
Discharge Against Medical Advice (DAMA) from hospital is associated with adverse outcomes and is considered an indicator of the responsiveness of hospitals to the needs of Aboriginal and Torres Strait Islander Australians, the indigenous people of Australia. We investigated demographic and clinical factors that predict DAMA in patients experiencing their first-ever inpatient admission for ischaemic heart disease (IHD). The study focuses particularly on the differences in the risk of DAMA in Aboriginal and non-Aboriginal patients while also investigating other factors in their own right.
A cross-sectional analytical study was undertaken using linked hospital and mortality data with complete coverage of Western Australia. Participants included all first-ever IHD inpatients (aged 25–79 years) admitted between 2005 and 2009, selected after a 15-year clearance period and who were discharged alive. The main outcome measure was DAMA as reflected in the hospital record.
Multiple logistic regression was used to determine disparities in DAMA between Aboriginal and non-Aboriginal patients, adjusting for a range of demographic and clinical factors, including comorbidity based on 5-year hospitalization history. A series of additional models were run on subgroups of the cohort to refine the analysis. Ethics approval was granted by the WA Human Research and the WA Aboriginal Health Ethics Committees.
Aboriginal patients comprised 4.3% of the cohort of 37,304 IHD patients and 23% of the 224 DAMAs. Emergency admission (OR=5.9, 95% CI 2.9-12.2), alcohol admission history (alcohol-related OR=2.9, 95% CI 2.0-4.2) and Aboriginality (OR 2.3, 95% CI 1.5-3.5) were the strongest predictors of DAMA in the multivariate model. Patients living in rural areas while attending non-metropolitan hospitals had a 50% higher risk of DAMA than those living and hospitalised in metropolitan areas. There was consistency in the ORs for Aboriginality in the different multivariate models using restricted sub-cohorts and different Aboriginal identifiers. Sex, IHD diagnosis type and co-morbidity scores imparted different risks in Aboriginal versus non-Aboriginal patients.
Understanding the risks and reasons for DAMA is important for health system policy and proactive management of those at risk of DAMA. Improving care to prevent DAMA should target unplanned admissions, rural hospitals and young men, Aboriginal people and those with alcohol and mental health comorbidities.
Discharge against medical advice; Aboriginal health; Ischaemic Heart Disease; Linked data; Australia
There is a lack of data on the out-of-hospital burden of acute lower respiratory infections (ALRI) in developed countries. Administrative datasets from emergency departments (ED) may assist in addressing this.
We undertook a retrospective population-based study of ED presentations for respiratory-related reasons linked to birth data from 245,249 singleton live births in Western Australia. ED presentation rates <9 years of age were calculated for different diagnoses and predictors of ED presentation <5 years were assessed by multiple logistic regression.
ED data from metropolitan WA, representing 178,810 births were available for analysis. From 35,136 presentations, 18,582 (52.9%) had an International Classification of Diseases (ICD) code for ALRI and 434 had a symptom code directly relating to an ALRI ICD code. A further 9600 presentations had a non-specific diagnosis. From the combined 19,016 ALRI presentations, the highest rates were in non-Aboriginal children aged 6–11 months (81.1/1000 child-years) and Aboriginal children aged 1–5 months (314.8/1000). Croup and bronchiolitis accounted for the majority of ALRI ED presentations. Of Aboriginal births, 14.2% presented at least once to ED before age 5 years compared to 6.5% of non-Aboriginal births. Male sex and maternal age <20 years for Aboriginal children and 20–29 years for non-Aboriginal children were the strongest predictors of presentation to ED with ALRI.
ED data can give an insight into the out-of-hospital burden of ALRI. Presentation rates to ED for ALRI were high, but are minimum estimates due to current limitations of the ED datasets. Recommendations for improvement of these data are provided. Despite these limitations, ALRI, in particular bronchiolitis and croup are important causes of presentation to paediatric EDs.
Emergency department; Outpatient; Acute lower respiratory infection; Data linkage, Children
Aboriginal Australians experience poorer outcomes from cancer compared to the non-Aboriginal population. Some progress has been made in understanding Aboriginal Australians’ perspectives about cancer and their experiences with cancer services. However, little is known of cancer service providers’ (CSPs) thoughts and perceptions regarding Aboriginal patients and their experiences providing optimal cancer care to Aboriginal people. Communication between Aboriginal patients and non-Aboriginal health service providers has been identified as an impediment to good Aboriginal health outcomes. This paper reports on CSPs’ views about the factors impairing communication and offers practical strategies for promoting effective communication with Aboriginal patients in Western Australia (WA).
A qualitative study involving in-depth interviews with 62 Aboriginal and non-Aboriginal CSPs from across WA was conducted between March 2006 - September 2007 and April-October 2011. CSPs were asked to share their experiences with Aboriginal patients and families experiencing cancer. Thematic analysis was carried out. Our analysis was primarily underpinned by the socio-ecological model, but concepts of Whiteness and privilege, and cultural security also guided our analysis.
CSPs’ lack of knowledge about the needs of Aboriginal people with cancer and Aboriginal patients’ limited understanding of the Western medical system were identified as the two major impediments to communication. For effective patient–provider communication, attention is needed to language, communication style, knowledge and use of medical terminology and cross-cultural differences in the concept of time. Aboriginal marginalization within mainstream society and Aboriginal people’s distrust of the health system were also key issues impacting on communication. Potential solutions to effective Aboriginal patient-provider communication included recruiting more Aboriginal staff, providing appropriate cultural training for CSPs, cancer education for Aboriginal stakeholders, continuity of care, avoiding use of medical jargon, accommodating patients’ psychosocial and logistical needs, and in-service coordination.
Individual CSPs identified challenges in cross-cultural communication and their willingness to accommodate culture-specific needs within the wider health care system including better communication with Aboriginal patients. However, participants’ comments indicated a lack of concerted effort at the system level to address Aboriginal disadvantage in cancer outcomes.
Aboriginal; Indigenous; Cancer; Communication; Health service provider; Cancer service provider
To conduct an exploratory, comparative study of the utilisation and effectiveness of tobacco cessation quitlines among aboriginal and non‐aboriginal Canadian smokers.
Population based quitlines that provide free cessation information, advice and counselling to Canadian smokers.
First time quitline callers, age 18 years of age and over, who called the quitline between August 2001 and December 2005 and who completed the evaluation and provided data on their ethnic status (n = 7082).
Demographic characteristics and tobacco behaviours of participants at intake and follow‐up; reasons for calling; actions taken toward quitting, and 6‐month follow‐up quit rates.
7% of evaluation participants in the time period reported aboriginal origins. Aboriginal participants were younger than non‐aboriginals but had similar smoking status and level of addiction at intake. Concern about future health and current health problems were the most common reasons aboriginal participants called. Six months after intake aboriginals and non‐aboriginals had taken similar actions with 57% making a 24‐hour quit attempt. Quit rates were higher for aboriginals than non‐aboriginals, particularly for men. The 6‐month prolonged abstinence rate for aboriginal men was 16.7% compared with 7.2% for aboriginal women and 9.4% and 8.3% for non‐aboriginal men and women, respectively.
This exploratory analysis showed that even without targeted promotion, aboriginal smokers do call Canadian quitlines, primarily for health related reasons. We also showed that the quitlines are effective at helping them to quit. As a population focused intervention, quitlines can reach a large proportion of smokers in a cost efficient manner. In aboriginal communities where smoking rates exceed 50% and multiple health risks and chronic diseases already exist, eliminating non‐ceremonial tobacco use must be a priority. Our results, although exploratory, suggest quitlines can be an effective addition to aboriginal tobacco cessation strategies.
smoking cessation; quitlines; aboriginal
Measuring the real burden of cardiovascular disease in Australian Aboriginals is complicated by under-identification of Aboriginality in administrative health data collections. Accurate data is essential to measure Australia's progress in its efforts to intervene to improve health outcomes of Australian Aboriginals. We estimated the under-ascertainment of Aboriginal status in linked morbidity and mortality databases in patients hospitalised with cardiovascular disease.
Persons with public hospital admissions for cardiovascular disease in Western Australia during 2000-2005 (and their 20-year admission history) or who subsequently died were identified from linkage data. The Aboriginal status flag in all records for a given individual was variously used to determine their ethnicity (index positive, and in all records both majority positive or ever positive) and stratified by region, age and gender. The index admission was the baseline comparator.
Index cases comprised 62,692 individuals who shared a total of 778,714 hospital admissions over 20 years, of which 19,809 subsequently died. There were 3,060 (4.9%) persons identified as Aboriginal on index admission. An additional 83 (2.7%) Aboriginal cases were identified through death records, increasing to 3.7% when cases with a positive Aboriginal identifier in the majority (≥50%) of previous hospital admissions over twenty years were added and by 20.8% when those with a positive flag in any record over 20 years were incorporated. These results equated to underestimating Aboriginal status in unlinked index admission by 2.6%, 3.5% and 17.2%, respectively. Deaths classified as Aboriginal in official records would underestimate total Aboriginal deaths by 26.8% (95% Confidence Interval 24.1 to 29.6%).
Combining Aboriginal determinations in morbidity and official death records increases ascertainment of unlinked cardiovascular morbidity in Western Australian Aboriginals. Under-identification of Aboriginal status is high in death records.
It is widely recognised that significant discrepancies exist between the health of indigenous and non-indigenous populations. Whilst the reasons are incompletely defined, one potential cause is that indigenous communities do not access healthcare to the same extent. We investigated healthcare utilisation rates in the Canadian Aboriginal population to elucidate the contribution of this fundamental social determinant for health to such disparities.
Healthcare utilisation data over a nine-year period were analysed for a cohort of nearly two million individuals to determine the rates at which Aboriginal and non-Aboriginal populations utilised two specialties (Cardiology and Ophthalmology) in Alberta, Canada. Unadjusted and adjusted healthcare utilisation rates obtained by mixed linear and Poisson regressions, respectively, were compared amongst three population groups - federally registered Aboriginals, individuals receiving welfare, and other Albertans.
Healthcare utilisation rates for Aboriginals were substantially lower than those of non-Aboriginals and welfare recipients at each time point and subspecialty studied [e.g. During 2005/06, unadjusted Cardiology utilisation rates were 0.28% (Aboriginal, n = 97,080), 0.93% (non-Aboriginal, n = 1,720,041) and 1.37% (Welfare, n = 52,514), p = <0.001]. The age distribution of the Aboriginal population was markedly different [2.7%≥65 years of age, non-Aboriginal 10.7%], and comparable utilisation rates were obtained after adjustment for fiscal year and estimated life expectancy [Cardiology: Incidence Rate Ratio 0.66, Ophthalmology: IRR 0.85].
The analysis revealed that Aboriginal people utilised subspecialty healthcare at a consistently lower rate than either comparatively economically disadvantaged groups or the general population. Notably, the differences were relatively invariant between the major provincial centres and over a nine year period. Addressing the causes of these discrepancies is essential for reducing marked health disparities, and so improving the health of Aboriginal people.
Published estimates of Aboriginal mortality and life expectancy (LE) for the eastern Australian states are derived from demographic modelling techniques to estimate the population and extent of under-recording of Aboriginality in death registration. No reliable empirical information on Aboriginal mortality and LE exists for New South Wales (NSW), the most populous Australian state in which 29% of Aboriginal people reside.
This paper estimates mortality and LE in a large, mainly metropolitan cohort of Aboriginal clients from the Aboriginal Medical Service (AMS) Redfern, Sydney, NSW.
Identifying information from patient records accrued by the AMS Redfern since 1980 of definitely Aboriginal clients, without distinction between Aboriginal and Torres Strait Islander (n=24,035), was extracted and linked to the National Death Index (NDI) at the Australian Institute of Health and Welfare (AIHW). Age-specific mortality rates and LEs for each sex were estimated using the AMS patient population as the denominator, discounted for deaths. Directly age-standardised mortality and LEs were estimated for 1995–1999, 2000–2004 and 2005–2009, along with 95% confidence intervals. Comparisons were made with other estimates of Aboriginal mortality and LE and with the total Australian population.
Mortality declined in the AMS Redfern cohort over 1995–2009, and the decline occurred mostly in the ≤44 year age range. Male LE at birth was estimated to be 64.4 years (95%CI:62.6-66.1) in 1995–1999, 65.6 years (95%CI:64.1-67.1) in 2000–2004, and 67.6 years (95%CI:65.9-69.2) for 2005–2009. In females, these LE estimates were 69.6 (95%CI:68.0-71.2), 71.1 (95%CI:69.9-72.4), and 71.4 (95%CI:70.0-72.8) years. LE in the AMS cohort was 11 years lower for males and 12 years lower for females than corresponding all-Australia LEs for the same periods. These were similar to estimates for Australian Aboriginal people overall for the same period by the Aboriginal Burden of Disease for 2009, using the General Growth Balance (GGB) model approach, and by the Australian Bureau of Statistics (ABS) for 2005–2007. LE in the AMS cohort was somewhat lower than these estimates for NSW Aboriginal people, and higher than ABS 2005–2007 estimates for Aboriginal people from Northern Territory, South Australia, and Western Australia.
The AMS Redfern cohort has provided the first empirically based estimates of mortality and LE trends in a large sample of Aboriginal people from NSW.
Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families.
In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data.
Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers.
Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people’s willingness and ability to accept care and support from these services. This context needs to be understood and acknowledged at the system level. More cultural safety training was requested by care providers but it was not seen as replacing the need for an Aboriginal worker in the palliative care team.
Palliative care; End of life care; Aboriginal; Indigenous; Cultural safety; Australia
A linked data file of birth records and hospital admissions was used to investigate inpatient hospital morbidity before 2 years of age for all non-Aboriginal and Aboriginal children born in Western Australia in 1986. Of the non-Aboriginal children, 31.8% were admitted to hospital at least once before the age of 2 years, with an overall admission rate of 526/1000 live births; the corresponding figures for Aboriginal children were 68.7% and 2797. The mean number of days in hospital for each non-Aboriginal child admitted was 7.4, and 26.5 for Aboriginal children. Of the total cohort, 21% of non-Aboriginal and 20% of Aboriginal children were admitted only once, and 4% of non-Aboriginal and 36% of Aboriginal children were admitted at least three times; 23% of non-Aboriginal and 24% of Aboriginal children were admitted for only one major disease category, and 1% of non-Aboriginal and 16% of Aboriginal children were in at least four categories. The highest admission rates and highest percentages of the cohort admitted were for gastrointestinal and respiratory diseases and social admissions. These results illustrate the importance for both descriptive and analytical research of relating admissions to hospital for the total population to the individual child, and of using clinically relevant disease classifications.
Nontypeable Haemophilus influenzae (NTHI) strains are responsible for respiratory-related infections which cause a significant burden of disease in Australian children. We previously identified a disparity in NTHI culture-defined carriage rates between Aboriginal and non-Aboriginal children (42% versus 11%). The aim of this study was to use molecular techniques to accurately determine the true NTHI carriage rates (excluding other culture-identical Haemophilus spp.) and assess whether the NTHI strain diversity correlates with the disparity in NTHI carriage rates. NTHI isolates were cultured from 595 nasopharyngeal aspirates collected longitudinally from asymptomatic Aboriginal (n = 81) and non-Aboriginal (n = 76) children aged 0 to 2 years living in the Kalgoorlie-Boulder region, Western Australia. NTHI-specific 16S rRNA gene PCR and PCR ribotyping were conducted on these isolates. Confirmation of NTHI by 16S rRNA gene PCR corrected the NTHI carriage rates from 42% to 36% in Aboriginal children and from 11% to 9% in non-Aboriginal children. A total of 75 different NTHI ribotypes were identified, with 51% unique to Aboriginal children and 13% unique to non-Aboriginal children (P < 0.0001). The strain richness (proportion of different NTHI ribotypes) was similar for Aboriginal (19%, 65/346) and non-Aboriginal children (19%, 37/192) (P = 0.909). Persistent carriage of the same ribotype was rare in the two groups, but colonization with multiple NTHI strains was more common in Aboriginal children than in non-Aboriginal children. True NTHI carriage was less than that estimated by culture. The Aboriginal children were more likely to carry unique and multiple NTHI strains, which may contribute to the chronicity of NTHI colonization and subsequent disease.
Despite a high prevalence of disability, Aboriginal Australians access disability services in Australia less than non-Aboriginal Australians with a disability. The needs of Aboriginal children with disability are particularly poorly understood. They can endure long delays in treatment which can impact adversely on development. This study sought to ascertain the factors involved in accessing services and support for Aboriginal children with a disability.
Using the focus group method, two community forums, one for health and service providers and one for carers of Aboriginal children with a disability, were held at an Aboriginal Community Controlled Health Service (ACCHS) in the Sydney, metropolitan area of New South Wales, Australia. Framework analysis was applied to qualitative data to elucidate key issues relevant to the dimensions of access framework. Independent coding consistency checks were performed and consensus of analysis verified by the entire research team, several of whom represented the local Aboriginal community.
Seventeen health and social service providers representing local area government and non-government-funded health and social service organisations and five carers participated in two separate forums between September and October 2011. Lack of awareness of services and inadequate availability were prominent concerns in both groups despite geographic proximity to a major metropolitan area with significant health infrastructure. Carers noted racism, insufficient or non-existent services, and the need for an enhanced role of ACCHSs and AHWs in disability support services. Providers highlighted logistical barriers and cultural and historical issues that impacted on the effectiveness of mainstream services for Aboriginal people.
Despite dedicated disability services in an urban community, geographic proximity does not mitigate lack of awareness and availability of support. This paper has enumerated a number of considerations to address provision of disability services in an urban Australian Aboriginal community including building expertise and specialist capacity within Aboriginal Health Worker positions and services.
Increasing awareness of services, facilitating linkages and referrals, eliminating complexities to accessing support, and working with families and Aboriginal community organisations within a framework of resilience and empowerment to ensure a relevant and acceptable model are necessary steps to improving support and care for Aboriginal children with a disability.
Childhood disability; Aboriginal and Torres Strait Islander peoples; Early intervention; Focus groups
Tobacco smoking is a well-recognised risk factor for many diseases . This study assesses the extent of smoking-attributable hospitalisation in the Northern Territory (NT) Aboriginal and non-Aboriginal populations, and examines smoking-attributable hospitalisation trends for the years 1998/99 to 2008/09.
Hospital discharge data were used for the analysis. The proportion of conditions attributable to tobacco smoking was calculated using the aetiological fraction method. Age-adjusted smoking-attributable hospitalisation rates were calculated to describe the impact of tobacco smoking on the health of Territorians. A negative binominal regression model was applied to examine trends in smoking-attributable hospitalisations.
Aboriginal Territorians were found to have higher rates of smoking-attributable hospitalisation, with Aboriginal males more than three times and Aboriginal females more than four times more likely to be hospitalised for smoking-attributable conditions than their non-Aboriginal counterparts. The age-adjusted hospitalisation rate for Aboriginal males increased by 31% and for Aboriginal females by 18% during the study period. There were more modest increases for NT non-Aboriginal males and females (5% and 17% respectively). The increase among Aboriginal males occurred up until 2005/06 followed by moderation in the trend. There were small reductions in smoking-attributable hospitalisation rates among all populations in younger age groups (less than 25 years).
Aboriginal Territorians experience much higher smoking-attributable hospitalisation rates than non-Aboriginal Territorians. The scale of the smoking burden and suggestion of recent moderation among Aboriginal men reinforce the importance of tobacco control interventions that are designed to meet the needs of the NT’s diverse population groups. Preventing smoking and increasing smoking cessation rates remain priorities for public health interventions in the NT.
Tobacco; Smoking; Attributable; Hospital admission; Condition; Aboriginal; Trend
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.
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.