Despite a lower overall incidence, Aboriginal Australians experience poorer outcomes from cancer compared with the non-Aboriginal population as manifested by higher mortality and lower 5-year survival rates. Lower participation in screening, later diagnosis of cancer, poor continuity of care, and poorer compliance with treatment are known factors contributing to this poor outcome. Nevertheless, many deficits remain in understanding the underlying reasons, with the recommendation of further exploration of Aboriginal beliefs and perceptions of cancer to help understand their care-seeking behavior. This could assist with planning and delivery of more effective interventions and better services for the Aboriginal population. This research explored Western Australian (WA) Aboriginal peoples' perceptions, beliefs and understanding of cancer.
A total of 37 Aboriginal people from various geographical areas within WA with a direct or indirect experience of cancer were interviewed between March 2006 and September 2007. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers. NVivo7 software was used to assist data management and analysis. A social constructionist framework provided a theoretical basis for analysis. Interpretation occurred within the research team with member checking and the involvement of an Aboriginal Reference Group assisting with ensuring validity and reliability.
Outcomes indicated that misunderstanding, fear of death, fatalism, shame, preference for traditional healing, beliefs such as cancer is contagious and other spiritual issues affected their decisions around accessing services. These findings provide important information for health providers who are involved in cancer-related service delivery.
These underlying beliefs must be specifically addressed to develop appropriate educational, screening and treatment approaches including models of care and support that facilitate better engagement of Indigenous people. Models of care and support that are more culturally-friendly, where health professionals take account of both Indigenous and Western beliefs about health and the relationship between these, and which engage and include Indigenous people need to be developed. Cultural security, removing system barriers and technical/scientific excellence are all important to ensure Indigenous people utilise healthcare to realise the benefits of modern cancer treatments.
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.
Aboriginal people, Australia; Health care professionals; Tobacco and health; Smoking cessation; Qualitative research
Despite declining smoking rates among the general Australian population, rates among Indigenous Australians remain high, with 47% of the Indigenous population reporting daily smoking - twice that of other Australians. Among women, smoking rates are highest in younger age groups, with more than half of Aboriginal women smoking during pregnancy. A lack of research focused on understanding the social context of smoking by Aboriginal women in rural Australia limits our ability to reduce these rates. This study aimed to explore the factors contributing to smoking initiation among rural Aboriginal women and girls and the social context within which smoking behaviour occurs.
We conducted three focus groups with 14 Aboriginal women and service providers and 22 individual interviews with Aboriginal women from four rural communities to explore their perceptions of the factors contributing to smoking initiation among Aboriginal girls.
Four inter-related factors were considered important to understanding the social context in which girls start smoking: colonisation and the introduction of tobacco; normalization of smoking within separate Aboriginal social networks; disadvantage and stressful lives; and the importance of maintaining relationships within extended family and community networks. Within this context, young girls use smoking to attain status and as a way of asserting Aboriginal identity and group membership, a way of belonging, not of rebelling. Family and social structures were seen as providing strong support, but limited the capacity of parents to influence children not to smoke. Marginalization was perceived to contribute to limited aspirations and opportunities, leading to pleasure-seeking in the present rather than having goals for the future.
The results support the importance of addressing contextual factors in any strategies aimed at preventing smoking initiation or supporting cessation among Aboriginal girls and women. It is critical to acknowledge Aboriginal identity and culture as a source of empowerment; and to recognise the role of persistent marginalization in contributing to the high prevalence and initiation of smoking.
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.
Aboriginal Health Workers (AHWs) have a mandate to deliver smoking cessation support to Aboriginal people. However, a high proportion of AHWs are smokers and this undermines their delivery of smoking cessation programs. Smoking tobacco is the leading contributor to the burden of disease in Aboriginal Australians and must be prevented. Little is known about how to enable AHWs to quit smoking. An understanding of the factors that perpetuate smoking in AHWs is needed to inform the development of culturally relevant programs that enable AHWs to quit smoking. A reduction of smoking in AHWs is important to promote their health and also optimise the delivery of smoking cessation support to Aboriginal clients.
We conducted a fundamental qualitative description study that was nested within a larger mixed method participatory research project. The individual and contextual factors that directly or indirectly promote (i.e. perpetuate) smoking behaviours in AHWs were explored in 34 interviews and 3 focus groups. AHWs, other health service staff and tobacco control personnel shared their perspectives. Data analysis was performed using a qualitative content analysis approach with collective member checking by AHW representatives.
AHWs were highly stressed, burdened by their responsibilities, felt powerless and undervalued, and used smoking to cope with and support a sense of social connectedness in their lives. Factors directly and indirectly associated with smoking were reported at six levels of behavioural influence: personal factors (e.g. stress, nicotine addiction), family (e.g. breakdown of family dynamics, grief and loss), interpersonal processes (e.g. socialisation and connection, domestic disputes), the health service (e.g. job insecurity and financial insecurity, demanding work), the community (e.g. racism, social disadvantage) and policy (e.g. short term and insecure funding).
An extensive array of factors perpetuated smoking in AHWs. The multitude of personal, social and environmental stressors faced by AHWs and the accepted use of communal smoking to facilitate socialisation and connection were primary drivers of smoking in AHWs in addition to nicotine dependence. Culturally sensitive multidimensional smoking cessation programs that address these factors and can be tailored to local needs are indicated.
Cardiovascular disease is the major cause of premature death of Indigenous Australians, and despite evidence that cardiac rehabilitation (CR) and secondary prevention can reduce recurrent disease and deaths, CR uptake is suboptimal. The National Health and Medical Research Council (NHMRC) guidelines Strengthening Cardiac Rehabilitation and Secondary Prevention for Aboriginal and Torres Strait Islander peoples, published in 2005, provide checklists for services to assist them to reduce the service gap for Indigenous people. This study describes health professionals' awareness, implementation, and perspectives of barriers to implementation of these guidelines based on semi-structured interviews conducted between November 2007 and June 2008 with health professionals involved in CR within mainstream health services in Western Australia (WA). Twenty-four health professionals from 17 services (10 rural, 7 metropolitan) listed in the WA Directory of CR services were interviewed.
The majority of respondents reported that they were unfamiliar with the NHMRC guidelines and as a consequence implementation of the recommendations was minimal and inconsistently applied. Respondents reported that they provided few in-patient CR-related services to Indigenous patients, services upon discharge were erratic, and they had few Indigenous-specific resources for patients. Issues relating to workforce, cultural competence, and service linkages emerged as having most impact on design and delivery of CR services for Indigenous people in WA.
This study has demonstrated limited awareness and poor implementation in WA of the recommendations of the NHMRC Strengthening Cardiac Rehabilitation and Secondary Prevention for Aboriginal and Torres Strait Islander Peoples: A Guide for Health Professionals. The disproportionate burden of CVD morbidity and mortality among Indigenous Australians mandates urgent attention to this problem and alternative approaches to CR delivery. Dedicated resources and alternative approaches to CR delivery for Indigenous Australians are needed.
Despite being at heightened risk of developing mental illness, there has been little research into the experience of depression in Australian Aboriginal populations. This study aimed to outline the expression, experience, manifestations and consequences of emotional distress and depression in Aboriginal men in central Australia.
Utilizing a grounded theory approach, in depth semi-structured interviews were conducted with 22 theoretically sampled young, middle aged and senior Aboriginal men and traditional healers. Analysis was conducted by a single investigator using constant comparison methods.
Depressive symptoms were common and identifiable, and largely consistent with symptom profiles seen in non-Aboriginal groups. For Aboriginal men, depression was expressed and understood as primarily related to weakness or injury of the spirit, with a lack of reference to hopelessness and specific somatic complaints. The primary contributors to depression related to the loss of connection to social and cultural features of Aboriginal life, cumulative stress and marginalisation.
Depression and depressive symptomatology clearly exists in Aboriginal men, however its determinants and expression differ from mainstream populations. Emotions were understood within the construction of spirit, Kurunpa, which was vulnerable to repetitive and powerful negative social forces, loss, and stress across the life course, and served to frame the physical and emotional experience and expression of depression.
Priority setting is about making decisions. Key issues faced during priority setting processes include identifying who makes these decisions, who sets the criteria, and who benefits. The paper reviews the literature and history around priority setting in research, particularly in Aboriginal health research. We explore these issues through a case study of the Cooperative Research Centre for Aboriginal Health (CRCAH)'s experience in setting and meeting priorities.
Historically, researchers have made decisions about what research gets done. Pressures of growing competition for research funds and an increased public interest in research have led to demands that appropriate consultation with stakeholders is conducted and that research is of benefit to the wider society. Within Australian Aboriginal communities, these demands extend to Aboriginal control of research to ensure that Aboriginal priorities are met.
In response to these demands, research priorities are usually agreed in consultation with stakeholders at an institutional level and researchers are asked to develop relevant proposals at a project level. The CRCAH's experience in funding rounds was that scientific merit was given more weight than stakeholders' priorities and did not necessarily result in research that met these priorities. After reviewing these processes in 2004, the CRCAH identified a new facilitated development approach. In this revised approach, the setting of institutional priorities is integrated with the development of projects in a way that ensures the research reflects stakeholder priorities.
This process puts emphasis on identifying projects that reflect priorities prior to developing the quality of the research, rather than assessing the relevance to priorities and quality concurrently. Part of the CRCAH approach is the employment of Program Managers who ensure that stakeholder priorities are met in the development of research projects. This has enabled researchers and stakeholders to come together to collaboratively develop priority-driven research. Involvement by both groups in project development has been found to be essential in making decisions that will lead to robust and useful research.
Aboriginal and Torres Strait Islander Australians experience widespread socioeconomic disadvantage and health inequality. In an attempt to make Indigenous health research more culturally-appropriate, Aboriginal and Torres Strait Islander Australians have called for more attention to the concept of emotional and social wellbeing (ESWB). Although it has been widely recognised that ESWB is of crucial importance to the health of Aboriginal and Torres Strait Islander peoples, there is little consensus on how to measure in Indigenous populations, hampering efforts to better understand and improve the psychosocial determinants of health. This paper explores the policy and political context to this situation, and suggests ways to move forward. The second part of the paper explores how scales can be evaluated in a health research setting, including assessments of endorsement, discrimination, internal and external reliability.
We then evaluate the use of a measure of stressful life events, the Negative Life Events Scale (NLES), in two samples of Aboriginal people living in remote communities in the Northern Territory of Australia. We argue that the Negative Life Events Scale is a promising assessment of psychosocial wellbeing in Aboriginal and Torres Strait Islander populations. Evaluation of the scale and its performance in other samples of Aboriginal and Torres Strait Islander populations is imperative if we hope to develop better, rather than more, scales for measuring ESWB among Indigenous Australians. Only then will it be possible to establish standardized methods of measuring ESWB and develop a body of comparable literature that can guide both a better understanding of ESWB, and evaluation of interventions designed to improve the psychosocial health of Indigenous populations and decrease health inequalities.
Aboriginal Australians have a life expectancy more than ten years less than that of non-Aboriginal Australians, reflecting their disproportionate burden of both communicable and non-communicable disease throughout the lifespan. Little is known about the health and health trajectories of Aboriginal children and, although the majority of Aboriginal people live in urban areas, data are particularly sparse in relation to children living in urban areas.
The Study of Environment on Aboriginal Resilience and Child Health (SEARCH) is a cohort study of Aboriginal children aged 0-17 years, from urban and large regional centers in New South Wales, Australia. SEARCH focuses on Aboriginal community identified health priorities of: injury; otitis media; vaccine-preventable conditions; mental health problems; developmental delay; obesity; and risk factors for chronic disease. Parents/caregivers and their children are invited to participate in SEARCH at the time of presentation to one of the four participating Aboriginal Community Controlled Health Organisations at Mount Druitt, Campbelltown, Wagga Wagga and Newcastle. Questionnaire data are obtained from parents/caregivers and children, along with signed permission for follow-up through repeat data collection and data linkage. All children have their height, weight, waist circumference and blood pressure measured and complete audiometry, otoscopy/pneumatic otoscopy and tympanometry. Children aged 1-7 years have speech and language assessed and their parents/caregivers complete the Parental Evaluation of Developmental Status. The Study aims to recruit 1700 children by the end of 2010 and to secure resources for long term follow up. From November 2008 to March 2010, 1010 children had joined the study. From those 446 children with complete data entry, participating children ranged in age from 2 weeks to 17 years old, with 144 aged 0-3, 147 aged 4-7, 75 aged 8-10 and 79 aged 11-17. 55% were male and 45% female.
SEARCH is built on strong community partnerships, under Aboriginal leadership, and addresses community priorities relating to a number of under-researched areas. SEARCH will provide a unique long-term resource to investigate the causes and trajectories of health and illness in urban Aboriginal children and to identify potential targets for interventions to improve health.
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.
breastfeeding duration; Australian Aboriginal children; isolation
Otitis media (OM) is the most common paediatric illness for which antibiotics are prescribed. In Australian Aboriginal children OM is frequently asymptomatic and starts at a younger age, is more common and more likely to result in hearing loss than in non-Aboriginal children. Absent transient evoked otoacoustic emissions (TEOAEs) may predict subsequent risk of OM.
100 Aboriginal and 180 non-Aboriginal children in a semi-arid zone of Western Australia were followed regularly from birth to age 2 years. Tympanometry was conducted at routine field follow-up from age 3 months. Routine clinical examination by an ENT specialist was to be done 3 times and hearing assessment by an audiologist twice. TEOAEs were measured at ages <1 and 1–2 months. Cox proportional hazards model was used to investigate the association between absent TEOAEs and subsequent risk of OM.
At routine ENT specialist clinics, OM was detected in 55% of 184 examinations in Aboriginal children and 26% of 392 examinations in non-Aboriginal children; peak prevalence was 72% at age 5–9 months in Aboriginal children and 40% at 10–14 months in non-Aboriginal children. Moderate-severe hearing loss was present in 32% of 47 Aboriginal children and 7% of 120 non-Aboriginal children aged 12 months or more.
TEOAE responses were present in 90% (46/51) of Aboriginal children and 99% (120/121) of non-Aboriginal children aged <1 month and in 62% (21/34) and 93% (108/116), respectively, in Aboriginal and non-Aboriginal children at age 1–2 months. Aboriginal children who failed TEOAE at age 1–2 months were 2.6 times more likely to develop OM subsequently than those who passed.
Overall prevalence of type B tympanograms at field follow-up was 50% (n = 78) in Aboriginal children and 20% (n = 95) in non-Aboriginal children.
The burden of middle ear disease is high in all children, but particularly in Aboriginal children, one-third of whom suffer from moderate-severe hearing loss. In view of the frequently silent nature of OM, every opportunity must be taken to screen for OM. Measurement of TEOAEs at age 1–2 months to identify children at risk of developing OM should be evaluated in a routine health service setting.
Heart disease is a leading cause of the gap in burden of disease between Aboriginal and non-Aboriginal Australians. Our study investigated short- and long-term mortality after admission for Aboriginal and non-Aboriginal people admitted with acute myocardial infarction (AMI) to public hospitals in New South Wales, Australia, and examined the impact of the hospital of admission on outcomes.
Admission records were linked to mortality records for 60047 patients aged 25–84 years admitted with a diagnosis of AMI between July 2001 and December 2008. Multilevel logistic regression was used to estimate adjusted odds ratios (AOR) for 30- and 365-day all-cause mortality.
Aboriginal patients admitted with an AMI were younger than non-Aboriginal patients, and more likely to be admitted to lower volume, remote hospitals without on-site angiography. Adjusting for age, sex, year and hospital, Aboriginal patients had a similar 30-day mortality risk to non-Aboriginal patients (AOR: 1.07; 95% CI 0.83-1.37) but a higher risk of dying within 365 days (AOR: 1.34; 95% CI 1.10-1.63). The latter difference did not persist after adjustment for comorbid conditions (AOR: 1.12; 95% CI 0.91-1.38). Patients admitted to more remote hospitals, those with lower patient volume and those without on-site angiography had increased risk of short and long-term mortality regardless of Aboriginal status.
Improving access to larger hospitals and those with specialist cardiac facilities could improve outcomes following AMI for all patients. However, major efforts to boost primary and secondary prevention of AMI are required to reduce the mortality gap between Aboriginal and non-Aboriginal people.
Hospital performance; Acute myocardial infarction; Ischaemic heart disease; Aboriginal health; Health outcomes; Multilevel modelling; Data linkage
Objective: To examine trends in road injury hospitalisation rates for Aboriginal and non-Aboriginal people in Western Australia.
Methods: Data from the Western Australian Hospital Morbidity Data System for the years between 1971 and 1997 were analysed. Poisson regression models were fitted to determine whether the trends were significant.
Results: The rate of hospitalisation due to road injury for Aboriginal people (719.1 per 100 000 population per year) over the time period examined was almost twice as high as that for non-Aboriginal people (363.4 per 100 000 population per year). Overall, the results showed that while hospitalisations from road injury involving non-Aboriginal people have been decreasing by 6.7% per three year period since 1971, the rates of hospitalisation for Aboriginal people have been increasing by 2.6% per three year period. Both of these trends were statistically significant. The alarming increasing trend observed for Aboriginal people was more pronounced in males, those aged 0–14 years and over 45 years, and for those living in rural areas.
Conclusions: As the rates of road injury for Aboriginal people are higher than for non-Aboriginal people, and are also following an increasing trend, road safety issues involving Aboriginal people need to be addressed urgently by health and transport authorities.
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.
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.
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.
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.
Cognition; Assessment; Cross-cultural; Testing; Indigenous; Aboriginal
Early Childhood Caries (ECC) is a widespread problem in Australian Aboriginal communities causing severe pain and sepsis. In addition dental services are difficult to access for many Aboriginal children and trying to obtain care can be stressful for the parents. The control of dental caries has been identified as a key indictor in the reduction of Indigenous disadvantage. Thus, there is a need for new approaches to prevent ECC, which reflect the cultural norms of Aboriginal communities.
This is a Phase II single arm trial designed to gather information on the effectiveness of a dental health education program for Aboriginal children aged 6 months, followed over 2 years. The program will deliver advice from Aboriginal Health Workers on tooth brushing, diet and the use of fluoride toothpaste to Aboriginal families. Six waves of data collection will be conducted to enable estimates of change in parental knowledge and their views on the acceptability of the program. The Aboriginal Health Workers will also be interviewed to record their views on the acceptability and program feasibility. Clinical data on the child participants will be recorded when they are 30 months old and compared with a reference population of similar children when the study began. Latent variable modeling will be used to interpret the intervention effects on disease outcome.
The research project will identify barriers to the implementation of a family centered Aboriginal oral health strategy, as well as the development of evidence to assist in the planning of a Phase III cluster randomized study.
Oral health; Aboriginal families; Health promotion
Aboriginal people in Australia experience the highest prevalence of diabetes in the country, an excess of preventable complications and early death. There is increasing evidence demonstrating the importance of healthcare systems for improvement of chronic illness care. The aims of this study were to assess the status of systems for chronic illness care in Aboriginal community health centres, and to explore whether more developed systems were associated with better quality of diabetes care.
This cross-sectional study was conducted in 12 Aboriginal community health centres in the Northern Territory of Australia. Assessment of Chronic Illness Care scale was adapted to measure system development in health centres, and administered by interview with health centre staff and managers. Based on a random sample of 295 clinical records from attending clients with diagnosed type 2 diabetes, processes of diabetes care were measured by rating of health service delivery against best-practice guidelines. Intermediate outcomes included the control of HbA1c, blood pressure, and total cholesterol.
Health centre systems were in the low to mid-range of development and had distinct areas of strength and weakness. Four of the six system components were independently associated with quality of diabetes care: an increase of 1 unit of score for organisational influence, community linkages, and clinical information systems, respectively, was associated with 4.3%, 3.8%, and 4.5% improvement in adherence to process standards; likewise, organisational influence, delivery system design and clinical information systems were related to control of HbA1c, blood pressure, and total cholesterol.
The state of development of health centre systems is reflected in quality of care outcome measures for patients. The health centre systems assessment tool should be useful in assessing and guiding development of systems for improvement of diabetes care in similar settings in Australia and internationally.
Indigenous Australians have significantly poorer status on a large range of health, educational and socioeconomic measures and successive Australian governments at state and federal level have committed to redressing these disparities. Despite this, improvements in Aboriginal health status have been modest, and Australia has much greater disparities in the health of its Indigenous people compared to countries that share a history characterised by colonisation and the dispossession of indigenous populations such as New Zealand, Canada and the United States of America. Efforts at policy and planning must ultimately be translated into practical strategies. This article outlines an approach that was effective in Western Australia in increasing the engagement and concern of Aboriginal people about high rates of sexually transmissible infections and sexual health issues. Many aspects of the approach are relevant for other health issues.
The complexity of Indigenous sexual health necessitates inter-agency and cross-governmental collaboration, in addition to Aboriginal leadership, accurate data, and community support. A recent approach covering all these areas is described. This has resulted in Aboriginal sexual health being more actively discussed within Aboriginal health settings than it once was and additional resources for Indigenous sexual health being available, with better communication and partnership across different health service providers and sectors. The valuable lessons in capacity building, collaboration and community engagement are readily transferable to other health issues, and may be useful for other health professionals working in the challenging area of Aboriginal health.
Health service planners and providers grapple with achieving Aboriginal ownership and leadership regarding their particular health issue, despite sincere concern and commitment to addressing Aboriginal health issues. This highlights the need to secure genuine Aboriginal engagement. Building capacity that enables Indigenous people and communities to fulfill their own goals is a long-term strategy and requires sustained commitment, but we argue is a prerequisite for better Indigenous health outcomes.
Using our research findings, we explore Harm Reduction and Methadone Maintenance Treatment (MMT) using an intersectional lens to provide a more complex understanding of Harm Reduction and MMT, particularly how Harm Reduction and MMT are experienced differently by people dependent on how they are positioned. Using the lens of intersectionality, we refine the notion of Harm Reduction by specifying the conditions in which both harm and benefit arise and how experiences of harm are continuous with wider experiences of domination and oppression;
A qualitative design that uses ethnographic methods of in-depth individual and focus group interviews and naturalistic observation was conducted in a large city in Canada. Participants included Aboriginal clients accessing mainstream mental health and addictions care and primary health care settings and healthcare providers;
All client-participants had profound histories of abuse and violence, most often connected to the legacy of colonialism (e.g., residential schooling) and ongoing colonial practices (e.g., stigma & everyday racism). Participants lived with co-occurring illness (e.g., HIV/AIDS, Hepatitis C, PTSD, depression, diabetes and substance use) and most lived in poverty. Many participants expressed mistrust with the healthcare system due to everyday experiences both within and outside the system that further marginalize them. In this paper, we focus on three intersecting issues that impact access to MMT: stigma and prejudice, social and structural constraints influencing enactment of peoples' agency, and homelessness;
Harm reduction must move beyond a narrow concern with the harms directly related to drugs and drug use practices to address the harms associated with the determinants of drug use and drug and health policy. An intersectional lens elucidates the need for harm reduction approaches that reflect an understanding of and commitment to addressing the historical, socio-cultural and political forces that shape responses to mental illness/health, addictions, including harm reduction and methadone maintenance treatment.
Objective: To pilot informed consent materials developed for Aboriginal parents in a vaccine trial, and evaluate their design and the informed consent process.
Methods: Cross sectional quantitative and qualitative survey of 20 Aboriginal and 20 non-Aboriginal women in Alice Springs. Information about the proposed research was presented to Aboriginal participants by an Aboriginal researcher, using purpose designed verbal, visual, and written materials. Non-Aboriginal participants received standard materials developed by the sponsor. Questionnaires were used to evaluate recall and understanding immediately and five days later. Qualitative analysis of Aboriginal participants' interviews was performed.
Results: There were no differences between the groups in understanding of diseases prevented by the vaccine, the potential risks of participating, or the voluntary nature of participation. Most Aboriginal participants had difficulty with the concept of a "licensed" versus "unlicensed" vaccine. The non-Aboriginal group had a good understanding of this. Aboriginal participants identified the use of the flipchart, along with a presentation by a doctor and Aboriginal health worker, as preferred delivery modes. Group presentations were preferred rather than one-on-one discussions. The use of the questionnaire posed considerable methodological difficulties.
Conclusions: A one-off oral presentation to Aboriginal participants is unlikely to produce "informed consent". Key but unfamiliar concepts require identification and particularly considered presentation.
To understand cross-cultural hospital-based end-of-life care from the perspective of bereaved First Nations family members.
Phenomenologic approach using qualitative in-depth interviews.
A rural town in northern Ontario with a catchment of 23 000 Ojibway and Cree aboriginal patients.
Ten recently bereaved aboriginal family members.
Semi-structured interviews were conducted, audiotaped, and transcribed. Data were analyzed using crystallization and immersion techniques. Triangulation and member-checking methods were used to ensure trustworthiness.
First Nations family members described palliative care as a community and extended family experience. They expressed the need for rooms and services that reflect this, including space to accommodate a larger number of visitors than is usual in Western society. Informants described the importance of communication strategies that involve respectful directness. They acknowledged that all hospital employees had roles in the care of their loved ones. Participants generally described their relatives’ relationships with nurses and the care the nurses provided as positive experiences.
Cross-cultural care at the time of death is always challenging. Service delivery and communication strategies must meet cultural and family needs. Respect, communication, appropriate environments, and caregiving were important to participants for culturally appropriate palliative care.
To compare the current state of health research on Aboriginal and non-Aboriginal youth in Canada.
A search of published academic literature on Canadian Aboriginal youth health, including a comprehensive review of both non-Aboriginal and Aboriginal youth research, was conducted using MEDLINE and summarized.
A MEDLINE search was conducted for articles published over a 10-year period (2000–2010). The search was limited to research articles pertaining to Canadian youth, using various synonyms for “Canada,” “youth,” and “Aboriginal.” Each article was coded according to 4 broad categories: Aboriginal identity, geographic location, research topic (health determinants, health status, health care), and the 12 key determinants of health proposed by the Public Health Agency of Canada (PHAC).
Of the 117 articles reviewed, only 34 pertained to Aboriginal youth, while the remaining 83 pertained to non-Aboriginal youth. The results revealed major discrepancies within the current body of research with respect to the geographic representation of Aboriginal youth, with several provinces missing from the literature, including the northern territories. Furthermore, the current research is not reflective of the demographic composition of Aboriginal youth, with an under-representation of Métis and urban Aboriginal youth. Health status of Aboriginal youth has received the most attention, appearing in 79% of the studies reviewed compared with 57% of the non-Aboriginal studies. The number of studies that focus on health determinants and health care is comparable for both groups, with the former accounting for 62 and 64% and the latter comprising 26 and 19% of Aboriginal and non-Aboriginal studies, respectively. However, this review reveals several differences with respect to specific focus on health determinants between the two populations. In non-Aboriginal youth studies, all the 12 key determinants of health of PHAC are explored, whereas in Aboriginal youth studies the health profile remains incomplete and several key determinants and health indicators are neglected.
The current studies are not reflective of the demographic and geographic profiles of Aboriginal youth in Canada, and they have also failed to provide a comprehensive examination of their unique health needs and concerns compared with studies on non-Aboriginal youth.
Aboriginal people; health status; determinants of health; youth
This article outlines the meaningful participation of eight Aboriginal and Torres Strait Islander community members employed as community researchers investigating the impact of pandemic influenza in rural and remote Indigenous communities in Australia. Aboriginal and Torres Strait Islander participation is now a requirement of health research involving Aboriginal and Torres Strait Islander communities. There is a growing literature on the different approaches to such involvement. Fundamental to this literature is an acknowledgement that Indigenous communities are no longer prepared to be research objects for external, mostly non-Indigenous researchers, and demand a role in decisions about what is researched and how it will be researched. In this paper, we describe the protracted process for site identification and recruitment and training of community researchers. We focus on the backgrounds of the Indigenous researchers and their motivations for involvement, and the strengths and challenges posed by Indigenous people researching in their own communities. Throughout the paper our concern is to document how genuine participation and the building of research capacity can occur.
A key feature of the research was the employment, training and strengthening the capacity of local Aboriginal and Torres Strait Islander community members in the role of community researchers. A series of training workshops were conducted in northern Australia and focussed on qualitative research methods, including data collection, data analysis and writing. The Indigenous researchers collected the community-based data, and worked in partnership with experienced academic researchers in the analysis and compilation of community reports. Parts of those community reports, as well as additional information supplied by the community researchers, forms the basis of this article. As the demand increases for involvement of Indigenous community members as researchers, focus needs to be paid to what constitutes meaningful participation. If active participation in all aspects of the research process is intended, this necessitates close attention to the knowledge and skills required for this to occur at every stage. Building research capacity means not simply equipping local people to undertake research on a particular project, but to have the knowledge and skills to undertake research in other areas.
There are considerable benefits for Indigenous people researching in their own communities. Most important for the community researchers on this project was the sense that they were doing important health work, not just conducting research. Given the persistent gaps between Indigenous and non-Indigenous health, this is perhaps one of the most important contributions of this type of research. Whilst research outcomes are undoubtedly important, in many cases the process used is of greater importance.
Indigenous; Participatory action research; Aboriginal; Torres Strait Islander; Participation