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1.  Challenges and strategies for cohort retention and data collection in an indigenous population: Australian Aboriginal Birth Cohort 
Background
Longitudinal prospective birth cohort studies are pivotal to identifying fundamental causes and determinants of disease and health over the life course. There is limited information about the challenges, retention, and collection strategies in the study of Indigenous populations. The aim is to describe the follow-up rates of an Australian Aboriginal Birth Cohort study and how they were achieved.
Methods
Participants were 686 babies enrolled between January 1987 and March 1990, born to a mother recorded in the Delivery Suite Register of the Royal Darwin Hospital (RDH) as a self-identified Aboriginal. The majority of the participants (70%) resided in Northern Territory within rural, remote and very remote Aboriginal communities that maintain traditional connections to their land and culture. The Aboriginal communities are within a sparsely populated (0.2 people/ km2) area of approximately 900,000 km2 (347sq miles), with poor communication and transport infrastructures. Follow-ups collecting biomedical and lifestyle data directly from participants in over 40 locations were conducted at 11.4 years (Wave-2) and 18.2 years (Wave-3), with Wave-4 follow-up currently underway.
Results
Follow-ups at 11 and 18 years of age successfully examined 86% and 72% of living participants respectively. Strategies addressing logistic, cultural and ethical challenges are documented.
Conclusions
Satisfactory follow-up rates of a prospective longitudinal Indigenous birth cohort with traditional characteristics are possible while maintaining scientific rigor in a challenging setting. Approaches included flexibility, respect, and transparent communication along with the adoption of culturally sensitive behaviours. This work should inform and assist researchers undertaking or planning similar studies in Indigenous and developing populations.
doi:10.1186/1471-2288-14-31
PMCID: PMC3942517  PMID: 24568142
Epidemiological method; Prospective longitudinal cohort; Ethnic minority; Health determinants; Australian; Aboriginal
2.  Oral health and social and emotional well-being in a birth cohort of Aboriginal Australian young adults 
BMC Public Health  2011;11:656.
Background
Social and emotional well-being is an important component of overall health. In the Indigenous Australian context, risk indicators of poor social and emotional well-being include social determinants such as poor education, employment, income and housing as well as substance use, racial discrimination and cultural knowledge. This study sought to investigate associations between oral health-related factors and social and emotional well-being in a birth cohort of young Aboriginal adults residing in the northern region of Australia's Northern Territory.
Methods
Data were collected on five validated domains of social and emotional well-being: anxiety, resilience, depression, suicide and overall mental health. Independent variables included socio-demographics, dental health behaviour, dental disease experience, oral health-related quality of life, substance use, racial discrimination and cultural knowledge.
Results
After adjusting for other covariates, poor oral health-related items were associated with each of the social and emotional well-being domains. Specifically, anxiety was associated with being female, having one or more decayed teeth and racial discrimination. Resilience was associated with being male, having a job, owning a toothbrush, having one or more filled teeth and knowing a lot about Indigenous culture; while being female, having experienced dental pain in the past year, use of alcohol, use of marijuana and racial discrimination were associated with depression. Suicide was associated with being female, having experience of untreated dental decay and racial discrimination; while being female, having experience of dental disease in one or more teeth, being dissatisfied about dental appearance and racial discrimination were associated with poor mental health.
Conclusion
The results suggest there may be value in including oral health-related initiatives when exploring the role of physical conditions on Indigenous social and emotional well-being.
doi:10.1186/1471-2458-11-656
PMCID: PMC3176220  PMID: 21851641
3.  Risk indicators for severe impaired oral health among indigenous Australian young adults 
BMC Oral Health  2010;10:1.
Background
Oral health impairment comprises three conceptual domains; pain, appearance and function. This study sought to: (1) estimate the prevalence of severe oral health impairment as assessed by a summary oral health impairment measure, including aspects of dental pain, dissatisfaction with dental appearance and difficulty eating, among a birth cohort of Indigenous Australian young adults (n = 442, age range 16-20 years); (2) compare prevalence according to demographic, socio-economic, behavioural, dental service utilisation and oral health outcome risk indicators; and (3) ascertain the independent contribution of those risk indicators to severe oral health impairment in this population.
Methods
Data were from the Aboriginal Birth Cohort (ABC) study, a prospective longitudinal investigation of Aboriginal individuals born 1987-1990 at an Australian regional hospital. Data for this analysis pertained to Wave-3 of the study only. Severe oral health impairment was defined as reported experience of toothache, poor dental appearance and food avoidance in the last 12 months. Logistic regression models were used to evaluate effects of demographic, socio-economic, behavioural, dental service utilisation and clinical oral disease indicators on severe oral health impairment. Effects were quantified as odds ratios (OR).
Results
The percent of participants with severe oral health impairment was 16.3 (95% CI 12.9-19.7). In the multivariate model, severe oral health impairment was associated with untreated dental decay (OR 4.0, 95% CI 1.6-9.6). In addition to that clinical indicator, greater odds of severe oral health impairment were associated with being female (OR 2.0, 95% CI 1.2-3.6), being aged 19-20 years (OR 2.1, 95% CI 1.2-3.6), soft drink consumption every day or a few days a week (OR 2.6, 95% 1.2-5.6) and non-ownership of a toothbrush (OR 1.9, 95% CI 1.1-3.4).
Conclusions
Severe oral health impairment was prevalent among this population. The findings suggest that public health strategies that address prevention and treatment of dental disease, self-regulation of soft drink consumption and ownership of oral self-care devices are needed if severe oral health impairment among Indigenous Australian young adults is to be reduced.
doi:10.1186/1472-6831-10-1
PMCID: PMC2827466  PMID: 20102640
4.  Oral health investigations of indigenous participants in remote settings: a methods paper describing the dental component of wave III of an Australian Aboriginal birth cohort study 
BMC Oral Health  2008;8:24.
Background
A prospective Aboriginal Birth Cohort (ABC) study has been underway in Australia's Northern Territory since 1987. Inclusion of oral epidemiological information in a follow-up study required flexible and novel approaches with unconventional techniques. Documenting these procedures may be of value to researchers interested in including oral health components in remotely-located studies. The objectives are to compare and describe dental data collection methods in wave III of the ABC study with a more conventional oral health investigation.
Methods
The Australian National Survey of Adult Oral Health (NSAOH) was considered the 'conventional' study. Differences between this investigation and the dental component of the ABC study were assessed in terms of ethics, location, recruitment, consent, privacy, equipment, examination, clinical data collection and replication. In the ABC study, recording of clinical data by different voice recording techniques were described and assessed for ease-of-use portability, reliability, time-efficiency and cost-effectiveness.
Results
Conventional investigation recruitment was by post and telephone. Participants self presented. Examinations took place in dental clinics, using customised dental chairs with standard dental lights attached. For all examinations, a dental assistant recorded dental data directly onto a laptop computer. By contrast, follow-up of ABC study participants involved a multi-phase protocol with reliance on locally-employed Indigenous advocates bringing participants to the examination point. Dental examinations occurred in settings ranging from health centre clinic rooms to improvised spaces outdoors. The dental chair was a lightweight, portable reclining camp chair and the dental light a fire-fighter's head torch with rechargeable batteries. The digital voice recorder was considered the most suitable instrument for clinical dental data collection in the ABC study in comparison with computer-based voice-recording software.
Conclusion
Oral health examinations among indigenous populations residing in predominantly remote locations are more logistically challenging than are surveys of the general population. However, lack of resources or conventional clinical infrastructures need not compromise the collection of dental data in such studies. Instead, there is a need to be flexible and creative in establishing culturally-sensitive environments with available resources, and to consider non-conventional approaches to data gathering.
doi:10.1186/1472-6831-8-24
PMCID: PMC2527296  PMID: 18702826
5.  An Australian Aboriginal birth cohort: a unique resource for a life course study of an Indigenous population. A study protocol 
Background
The global rise of Type 2 diabetes and its complications has drawn attention to the burden of non-communicable diseases on populations undergoing epidemiological transition. The life course approach of a birth cohort has the potential to increase our understanding of the development of these chronic diseases. In 1987 we sought to establish an Australian Indigenous birth cohort to be used as a resource for descriptive and analytical studies with particular attention on non-communicable diseases. The focus of this report is the methodology of recruiting and following-up an Aboriginal birth cohort of mobile subjects belonging to diverse cultural and language groups living in a large sparsely populated area in the Top End of the Northern Territory of Australia.
Methods
A prospective longitudinal study of Aboriginal singletons born at the Royal Darwin Hospital 1987–1990, with second wave cross-sectional follow-up examination of subjects 1998–2001 in over 70 different locations. A multiphase protocol was used to locate and collect data on 686 subjects with different approaches for urban and rural children. Manual chart audits, faxes to remote communities, death registries and a full time subject locator with past experience of Aboriginal communities were all used.
Discussion
The successful recruitment of 686 Indigenous subjects followed up 14 years later with vital status determined for 95% of subjects and examination of 86% shows an Indigenous birth cohort can be established in an environment with geographic, cultural and climatic challenges. The high rates of recruitment and follow up indicate there were effective strategies of follow-up in a supportive population.
doi:10.1186/1472-698X-3-1
PMCID: PMC152651  PMID: 12659639

Results 1-5 (5)