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1.  Adherence to management guidelines for growth faltering and anaemia in remote dwelling Australian Aboriginal infants and barriers to health service delivery 
Background
Remote dwelling Aboriginal infants from northern Australia have a high burden of disease and frequently use health services. Little is known about the quality of infant care provided by remote health services. This study describes the adherence to infant guidelines for anaemia and growth faltering by remote health staff and barriers to effective service delivery in remote settings.
Methods
A mixed method study drew data from 24 semi-structured interviews with clinicians working in two remote communities in northern Australia and a retrospective cohort study of Aboriginal infants from these communities, born 2004–2006 (n = 398). Medical records from remote health centres were audited. The main outcome measures were the period prevalence of infants with anaemia and growth faltering and management of these conditions according to local guidelines. Qualitative data assessed clinicians’ perspectives on barriers to effective remote health service delivery.
Results
Data from 398 health centre records were analysed. Sixty eight percent of infants were anaemic between six and twelve months of age and 42% had documented growth faltering by one year. Analysis of the growth data by the authors however found 86% of infants experienced growth faltering over 12 months. Clinical management and treatment completion was poor for both conditions. High staff turnover, fragmented models of care and staff poorly prepared for their role were barriers perceived by clinicians’ to impact upon the quality of service delivery.
Conclusion
Among Aboriginal infants in northern Australia, malnutrition and anaemia are common and occur early. Diagnosis of growth faltering and clinicians’ adherence to management guidelines for both conditions was poor. Antiquated service delivery models, organisation of staff and rapid staff turnover contributed to poor quality of care. Service redesign, education and staff stability must be a priority to redress serious deficits in quality of care provided for these infants.
doi:10.1186/1472-6963-13-250
PMCID: PMC3750842  PMID: 23819687
Aboriginal; Adherence; Anaemia; Australia; Barriers; Growth faltering; Infant; Management guidelines; Primary health care; Remote; Quality of care
2.  Improving Aboriginal maternal and infant health services in the ‘Top End’ of Australia; synthesis of the findings of a health services research program aimed at engaging stakeholders, developing research capacity and embedding change 
Background
Health services research is a well-articulated research methodology and can be a powerful vehicle to implement sustainable health service reform. This paper presents a summary of a five-year collaborative program between stakeholders and researchers that led to sustainable improvements in the maternity services for remote-dwelling Aboriginal women and their infants in the Top End (TE) of Australia.
Methods
A mixed-methods health services research program of work was designed, using a participatory approach. The study area consisted of two large remote Aboriginal communities in the Top End of Australia and the hospital in the regional centre (RC) that provided birth and tertiary care for these communities. The stakeholders included consumers, midwives, doctors, nurses, Aboriginal Health Workers (AHW), managers, policy makers and support staff. Data were sourced from: hospital and health centre records; perinatal data sets and costing data sets; observations of maternal and infant health service delivery and parenting styles; formal and informal interviews with providers and women and focus groups. Studies examined: indicator sets that identify best care, the impact of quality of care and remoteness on health outcomes, discrepancies in the birth counts in a range of different data sets and ethnographic studies of ‘out of hospital’ or health centre birth and parenting. A new model of maternity care was introduced by the health service aiming to improve care following the findings of our research. Some of these improvements introduced during the five-year research program of research were evaluated.
Results
Cost effective improvements were made to the acceptability, quality and outcomes of maternity care. However, our synthesis identified system-wide problems that still account for poor quality of infant services, specifically, unacceptable standards of infant care and parent support, no apparent relationship between volume and acuity of presentations and staff numbers with the required skills for providing care for infants, and an ‘outpatient’ model of care. Services were also characterised by absent Aboriginal leadership and inadequate coordination between remote and tertiary services that is essential to improve quality of care and reduce ‘system-introduced’ risk.
Conclusion
Evidence-informed redesign of maternity services and delivery of care has improved clinical effectiveness and quality for women. However, more work is needed to address substandard care provided for infants and their parents.
doi:10.1186/1472-6963-14-241
PMCID: PMC4057802  PMID: 24890910
Aboriginal; Australian; Indigenous maternity care; Indigenous infant care; Cultural safety; Indigenous health care workforce; Remote health services
3.  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
4.  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
5.  Identifying barriers and improving communication between cancer service providers and Aboriginal patients and their families: the perspective of service providers 
Background
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).
Methods
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.
Results
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.
Conclusion
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.
doi:10.1186/1472-6963-13-460
PMCID: PMC3835135  PMID: 24188503
Aboriginal; Indigenous; Cancer; Communication; Health service provider; Cancer service provider
6.  Aboriginal Families Study: a population-based study keeping community and policy goals in mind right from the start 
Background
Australian Aboriginal and Torres Strait Islander women are between two to five times more likely to die in childbirth than non-Aboriginal women, and two to three times more likely to have a low birthweight infant. Babies with a low birthweight are more likely to have chronic health problems in adult life. Currently, there is limited research evidence regarding effective interventions to inform new initiatives to strengthen antenatal care for Aboriginal families.
Method/Design
The Aboriginal Families Study is a cross sectional population-based study investigating the views and experiences of Aboriginal and non-Aboriginal women having an Aboriginal baby in the state of South Australia over a 2-year period. The primary aims are to compare the experiences and views of women attending standard models of antenatal care with those accessing care via Aboriginal Family Birthing Program services which include Aboriginal Maternal Infant Care (AMIC) Workers as members of the clinical team; to assess factors associated with early and continuing engagement with antenatal care; and to use the information to inform strengthening of services for Aboriginal families. Women living in urban, regional and remote areas of South Australia have been invited to take part in the study by completing a structured interview or, if preferred, a self-administered questionnaire, when their baby is between 4–12 months old.
Discussion
Having a baby is an important life event in all families and in all cultures. How supported women feel during pregnancy, how women and families are welcomed by services, how safe they feel coming in to hospitals to give birth, and what happens to families during a hospital stay and in the early months after the birth of a new baby are important social determinants of maternal, newborn and child health outcomes. The Aboriginal Families Study builds on consultation with Aboriginal communities across South Australia. The project has been implemented with guidance from an Aboriginal Advisory Group keeping community and policy goals in mind right from the start. The results of the study will provide a unique resource to inform quality improvement and strengthening of services for Aboriginal families.
doi:10.1186/1475-9276-12-41
PMCID: PMC3689616  PMID: 23767813
Antenatal care; Health inequalities; Indigenous health; Maternal health; Participatory research; Perinatal health outcomes
7.  "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
8.  Delivery of maternal health care in Indigenous primary care services: baseline data for an ongoing quality improvement initiative 
Background
Australia's Aboriginal and Torres Strait Islander (Indigenous) populations have disproportionately high rates of adverse perinatal outcomes relative to other Australians. Poorer access to good quality maternal health care is a key driver of this disparity. The aim of this study was to describe patterns of delivery of maternity care and service gaps in primary care services in Australian Indigenous communities.
Methods
We undertook a cross-sectional baseline audit for a quality improvement intervention. Medical records of 535 women from 34 Indigenous community health centres in five regions (Top End of Northern Territory 13, Central Australia 2, Far West New South Wales 6, Western Australia 9, and North Queensland 4) were audited. The main outcome measures included: adherence to recommended protocols and procedures in the antenatal and postnatal periods including: clinical, laboratory and ultrasound investigations; screening for gestational diabetes and Group B Streptococcus; brief intervention/advice on health-related behaviours and risks; and follow up of identified health problems.
Results
The proportion of women presenting for their first antenatal visit in the first trimester ranged from 34% to 49% between regions; consequently, documentation of care early in pregnancy was poor. Overall, documentation of routine antenatal investigations and brief interventions/advice regarding health behaviours varied, and generally indicated that these services were underutilised. For example, 46% of known smokers received smoking cessation advice/counselling; 52% of all women received antenatal education and 51% had investigation for gestational diabetes. Overall, there was relatively good documentation of follow up of identified problems related to hypertension or diabetes, with over 70% of identified women being referred to a GP/Obstetrician.
Conclusion
Participating services had both strengths and weaknesses in the delivery of maternal health care. Increasing access to evidence-based screening and health information (most notably around smoking cessation) were consistently identified as opportunities for improvement across services.
doi:10.1186/1471-2393-11-16
PMCID: PMC3066246  PMID: 21385387
9.  Factors influencing health care utilisation among Aboriginal cardiac patients in central Australia: a qualitative study 
Background
Aboriginal Australians suffer from poorer overall health compared to the general Australian population, particularly in terms of cardiovascular disease and prognosis following a cardiac event. Despite such disparities, Aboriginal Australians utilise health care services at much lower rates than the general population. Improving health care utilisation (HCU) among Aboriginal cardiac patients requires a better understanding of the factors that constrain or facilitate use. The study aimed to identify ecological factors influencing health care utilisation (HCU) for Aboriginal cardiac patients, from the time of their cardiac event to 6–12 months post-event, in central Australia.
Methods
This qualitative descriptive study was guided by an ecological framework. A culturally-sensitive illness narrative focusing on Aboriginal cardiac patients’ “typical” journey guided focus groups and semi-structured interviews with Aboriginal cardiac patients, non-cardiac community members, health care providers and community researchers. Analysis utilised a thematic conceptual matrix and mixed coding method. Themes were categorised into Predisposing, Enabling, Need and Reinforcing factors and identified at Individual, Interpersonal, Primary Care and Hospital System levels.
Results
Compelling barriers to HCU identified at the Primary Care and Hospital System levels included communication, organisation and racism. Individual level factors related to HCU included language, knowledge of illness, perceived need and past experiences. Given these individual and health system barriers patients were reliant on utilising alternate family-level supports at the Interpersonal level to enable their journey.
Conclusion
Aboriginal cardiac patients face significant barriers to HCU, resulting in sub-optimal quality of care, placing them at risk for subsequent cardiovascular events and negative health outcomes. To facilitate HCU amongst Aboriginal people, strategies must be implemented to improve communication on all levels and reduce systemic barriers operating within the health system.
doi:10.1186/1472-6963-13-83
PMCID: PMC3606832  PMID: 23497140
Health care utilisation; Facilitators/barriers to care; Cardiovascular disease; Indigenous; Aboriginal
10.  Aboriginal Health Workers experience multilevel barriers to quitting smoking: a qualitative study 
Introduction
Long-term measures to reduce tobacco consumption in Australia have had differential effects in the population. The prevalence of smoking in Aboriginal peoples is currently more than double that of the non-Aboriginal population. Aboriginal Health Workers are responsible for providing primary health care to Aboriginal clients including smoking cessation programs. However, Aboriginal Health Workers are frequently smokers themselves, and their smoking undermines the smoking cessation services they deliver to Aboriginal clients. An understanding of the barriers to quitting smoking experienced by Aboriginal Health Workers is needed to design culturally relevant smoking cessation programs. Once smoking is reduced in Aboriginal Health Workers, they may then be able to support Aboriginal clients to quit smoking.
Methods
We undertook a fundamental qualitative description study underpinned by social ecological theory. The research was participatory, and academic researchers worked in partnership with personnel from the local Aboriginal health council. The barriers Aboriginal Health Workers experience in relation to quitting smoking were explored in 34 semi-structured interviews (with 23 Aboriginal Health Workers and 11 other health staff) and 3 focus groups (n = 17 participants) with key informants. Content analysis was performed on transcribed text and interview notes.
Results
Aboriginal Health Workers spoke of burdensome stress and grief which made them unable to prioritise quitting smoking. They lacked knowledge about quitting and access to culturally relevant quitting resources. Interpersonal obstacles included a social pressure to smoke, social exclusion when quitting, and few role models. In many workplaces, smoking was part of organisational culture and there were challenges to implementation of Smokefree policy. Respondents identified inadequate funding of tobacco programs and a lack of Smokefree public spaces as policy level barriers. The normalisation of smoking in Aboriginal society was an overarching challenge to quitting.
Conclusions
Aboriginal Health Workers experience multilevel barriers to quitting smoking that include personal, social, cultural and environmental factors. Multidimensional smoking cessation programs are needed that reduce the stress and burden for Aboriginal Health Workers; provide access to culturally relevant quitting resources; and address the prevailing normalisation of smoking in the family, workplace and community.
doi:10.1186/1475-9276-11-27
PMCID: PMC3477099  PMID: 22621767
Aboriginal people, Australia; Health care professionals; Tobacco and health; Smoking cessation; Qualitative research
11.  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
12.  Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives 
BMC Palliative Care  2013;12:26.
Background
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.
Methods
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.
Results
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.
Conclusion
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.
doi:10.1186/1472-684X-12-26
PMCID: PMC3729490  PMID: 23875957
Palliative care; End of life care; Aboriginal; Indigenous; Cultural safety; Australia
13.  The study protocol for a randomized controlled trial of a family-centred tobacco control program about environmental tobacco smoke (ETS) to reduce respiratory illness in Indigenous infants 
BMC Public Health  2010;10:114.
Background
Acute respiratory illness (ARI) is the most common cause of acute presentations and hospitalisations of young Indigenous children in Australia and New Zealand (NZ). Environmental tobacco smoke (ETS) from household smoking is a significant and preventable contributor to childhood ARI. This paper describes the protocol for a study which aims to test the efficacy of a family-centred tobacco control program about ETS to improve the respiratory health of Indigenous infants in Australia and New Zealand. For the purpose of this paper 'Indigenous' refers to Australia's Aboriginal and Torres Strait Islander peoples when referring to Australian Indigenous populations. In New Zealand, the term 'Indigenous' refers to Māori.
Methods/Design
This study will be a parallel, randomized, controlled trial. Participants will be Indigenous women and their infants, half of whom will be randomly allocated to an 'intervention' group, who will receive the tobacco control program over three home visits in the first three months of the infant's life and half to a control group receiving 'usual care' (i.e. they will not receive the tobacco control program). Indigenous health workers will deliver the intervention, the goal of which is to reduce or eliminate infant exposure to ETS. Data collection will occur at baseline (shortly after birth) and when the infant is four months and one year of age. The primary outcome is a doctor-diagnosed, documented case of respiratory illness in participating infants.
Discussion
Interventions aimed at reducing exposure of Indigenous children to ETS have the potential for significant benefits for Indigenous communities. There is currently a dearth of evidence for the effect of tobacco control interventions to reduce children's exposure to ETS among Indigenous populations. This study will provide high-quality evidence of the efficacy of a family-centred tobacco control program on ETS to reduce respiratory illness. Outcomes of our study will be important and significant for Indigenous tobacco control in Australia and New Zealand and prevention of respiratory illness in children.
Trial registration
Australian New Zealand Clinical Trials Registry (ACTRN12609000937213)
doi:10.1186/1471-2458-10-114
PMCID: PMC2846866  PMID: 20205950
14.  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
15.  A cross-sectional survey assessing the acceptability and feasibility of self-report electronic data collection about health risks from patients attending an Aboriginal Community Controlled Health Service 
Background
Aboriginal Australians experience significantly worse health and a higher burden of chronic disease than non-Aboriginal Australians. Electronic self-report data collection is a systematic means of collecting data about health risk factors which could help to overcome screening barriers and assist in the provision of preventive health care. Yet this approach has not been tested in an Aboriginal health care setting. Therefore, the aim of this study was to examine the acceptability and feasibility of a health risk questionnaire administered on a touch screen laptop computer for patients attending an Aboriginal Community Controlled Health Service (ACCHS).
Methods
In 2012, consecutive adult patients attending an ACCHS in rural New South Wales, Australia, were asked to complete a health risk survey on a touch screen computer. Health risk factors assessed in the questionnaire included smoking status, body mass index, and level of physical activity. The questionnaire included visual cues to improve accuracy and minimise literacy barriers and was completed while participants were waiting for their appointment.
Results
A total of 188 participants completed the questionnaire, with a consent rate of 71%. The mean time taken to complete the questionnaire was less than 12 minutes. Over 90% of participants agreed that: the questionnaire instructions were easy to follow; the touch screen computer was easy to use; they had enough privacy; the questions were easy to understand; they felt comfortable answering all the questions.
Conclusions
Results indicate that the use of a touch screen questionnaire to collect information from patients about health risk factors affecting Aboriginal Australians is feasible and acceptable in the ACCHS setting. This approach has potential to improve identification and management of at-risk individuals, therein providing significant opportunities to reduce the burden of disease among Aboriginal Australians.
doi:10.1186/1472-6947-14-34
PMCID: PMC4005463  PMID: 24739205
Australia; Aboriginal; Touch screen questionnaire; Health risk factors; Screening
16.  Planning, Implementing, and Evaluating a Program to Address the Oral Health Needs of Aboriginal Children in Port Augusta, Australia 
Aboriginal Australian children experience profound oral health disparities relative to their non-Aboriginal counterparts. In response to community concerns regarding Aboriginal child oral health in the regional town of Port Augusta, South Australia, a child dental health service was established within a Community Controlled Aboriginal Health Service. A partnership approach was employed with the key aims of (1) quantifying rates of dental service utilisation, (2) identifying factors influencing participation, and (3) planning and establishing a program for delivery of Aboriginal children's dental services that would increase participation and adapt to community needs. In planning the program, levels of participation were quantified and key issues identified through semistructured interviews. After 3.5 years, the participation rate for dental care among the target population increased from 53 to 70 percent. Key areas were identified to encourage further improvements and ensure sustainability in Aboriginal child oral health in this regional location.
doi:10.1155/2012/496236
PMCID: PMC3346980  PMID: 22577401
17.  Birth outcomes in the Inuit-inhabited areas of Canada 
Background
Information on health disparities between Aboriginal and non-Aboriginal populations is essential for developing public health programs aimed at reducing such disparities. The lack of data on disparities in birth outcomes between Inuit and non-Inuit populations in Canada prompted us to compare birth outcomes in Inuit-inhabited areas with those in the rest of the country and in other rural and northern areas of Canada.
Methods
We conducted a cohort study of all births in Canada during 1990–2000 using linked vital data. We identified 13 642 births to residents of Inuit-inhabited areas and 4 054 489 births to residents of all other areas. The primary outcome measures were preterm birth, stillbirth and infant death.
Results
Compared with the rest of Canada, Inuit-inhabited areas had substantially higher rates of preterm birth (risk ratio [RR] 1.45, 95% confidence interval [CI] 1.38–1.52), stillbirth (RR 1.68, 95% CI 1.38–2.04) and infant death (RR 3.61, 95% CI 3.17–4.12). The risk ratios and absolute differences in risk for these outcomes changed little over time. Excess mortality was observed for all major causes of infant death, including congenital anomalies (RR 1.64), immaturity-related conditions (RR 2.96), asphyxia (RR 2.43), sudden infant death syndrome (RR 7.15), infection (RR 8.32) and external causes (RR 7.30). Maternal characteristics accounted for only a small part of the risk disparities. Substantial risk ratios for preterm birth, stillbirth and infant death remained when the comparisons were restricted to other rural or northern areas of Canada.
Interpretation
The Inuit-inhabited areas had much higher rates of preterm birth, stillbirth and infant death compared with the rest of Canada and with other rural and northern areas. There is an urgent need for more effective interventions to improve maternal and infant health in Inuit-inhabited areas.
doi:10.1503/cmaj.082042
PMCID: PMC2826464  PMID: 20100852
18.  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
19.  Individual and district-level predictors of alcohol use: cross sectional findings from a rural mental health survey in Australia 
BMC Public Health  2012;12:586.
Background
Excessive alcohol use is a significant problem in rural and remote Australia. The factors contributing to patterns of alcohol use have not been adequately explained, yet the geographic variation in rates suggests a potential contribution of district-level factors, such as socio-economic disadvantage, rates of population change, environmental adversity, and remoteness from services/population centres. This paper aims to investigate individual-level and district-level predictors of alcohol use in a sample of rural adults.
Methods
Using baseline survey data (N = 1,981) from the population-based Australian Rural Mental Health Study of community dwelling residents randomly selected from the Australia electoral roll, hierarchal logistic regression models were fitted for three outcomes: 1) at-risk alcohol use, indicated by Alcohol Use Disorders Identification Test scores ≥8; 2) high alcohol consumption (> 40 drinks per month); and 3) lifetime consequences of alcohol use. Predictor variables included demographic factors, pre-dispositional factors, recent difficulties and support, mental health, rural exposure and district-level contextual factors.
Results
Gender, age, marital status, and personality made the largest contribution to at-risk alcohol use. Five or more adverse life events in the past 12 months were also independently associated with at-risk alcohol use (Adjusted Odds Ratio [AOR] 3.3, 99%CI 1.2, 8.9). When these individual-level factors were controlled for, at-risk alcohol use was associated with having spent a lower proportion of time living in a rural district (AOR 1.7, 99%CI 1.3, 2.9). Higher alcohol consumption per month was associated with higher district-level socio-economic ranking, indicating less disadvantage (AOR 1.2, 99%CI 1.02, 1.4). Rural exposure and district-level contextual factors were not significantly associated with lifetime consequences of alcohol use.
Conclusions
Although recent attention has been directed towards the potential adverse health effects of district or community level adversity across rural regions, our study found relatively few district-level factors contributing to at-risk alcohol consumption after controlling for individual-level factors. Population-based prevention strategies may be most beneficial in rural areas with a higher socio-economic ranking, while individual attention should be focused towards rural residents with multiple recent adverse life events, and people who have spent less time residing in a rural area.
doi:10.1186/1471-2458-12-586
PMCID: PMC3491021  PMID: 22853803
Alcohol; Mental health; Rural health
20.  “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
21.  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
22.  STI in remote communities: improved and enhanced primary health care (STRIVE) study protocol: a cluster randomised controlled trial comparing ‘usual practice’ STI care to enhanced care in remote primary health care services in Australia 
BMC Infectious Diseases  2013;13:425.
Background
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.
Methods/design
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.
Discussion
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.
Trial registration
Australian and New Zealand Clinical Trials Registry ACTRN12610000358044
doi:10.1186/1471-2334-13-425
PMCID: PMC3847940  PMID: 24016143
Aboriginal; Indigenous; Sexually transmitted infections; Chlamydia; Gonorrhoea; Trichomonas; Continuous quality improvement; Protocol; Prevalence; Remote
23.  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
24.  Under-ascertainment of Aboriginality in records of cardiovascular disease in hospital morbidity and mortality data in Western Australia: a record linkage study 
Background
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.
Methods
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.
Results
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%).
Conclusions
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.
doi:10.1186/1471-2288-10-111
PMCID: PMC3024993  PMID: 21192809
25.  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

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