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Challenges and strategies for cohort retention and data collection in an indigenous population: Australian Aboriginal Birth Cohort

Lawrance, Megan, Sayers, Susan and Singh, Gurmeet (2014). Challenges and strategies for cohort retention and data collection in an indigenous population: Australian Aboriginal Birth Cohort. BMC Medical Research Methodology,14(Article No. 31).

Document type: Journal Article
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Title Challenges and strategies for cohort retention and data collection in an indigenous population: Australian Aboriginal Birth Cohort
Author Lawrance, Megan
Sayers, Susan
Singh, Gurmeet
Journal Name BMC Medical Research Methodology
Publication Date 2014
Volume Number 14
Issue Number Article No. 31
ISSN 1471-2288   (check CDU catalogue open catalogue search in new window)
Scopus ID 2-s2.0-84897638024
Total Pages 8
Place of Publication United Kingdom
Publisher BioMed Central Ltd.
HERDC Category C1 - Journal Article (DIISR)
Abstract 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.
Keywords Epidemiological method
Prospective longitudinal cohort
Ethnic minority
Health determinants
Australian
Aboriginal
DOI http://dx.doi.org/10.1186/1471-2288-14-31   (check subscription with CDU E-Gateway service for CDU Staff and Students  check subscription with CDU E-Gateway in new window)
Additional Notes This is an Open Access article distributed under the terms of the Creative Commons Attribution License 2.0, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Description for Link Link to CC Attribution 2.0 License
URL https://creativecommons.org/licenses/by/2.0


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