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

Lawrance, Megan; Sayers, Susan; Singh, Gurmeet

doi:10.1186/1471-2288-14-31

Cited by 19 publications

(15 citation statements)

References 19 publications

(21 reference statements)

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“… 19 , 20 Lawrance and colleagues have described the challenges for cohort retention and data collection within the Australian Aboriginal Birth Cohort study, a prospective study of 686 children in Darwin, Northern Territory. 33 These challenges include limited means of contacting participants, high mobility, and cultural diversity (including language); LSIC has demonstrated the ability to meet these challenges on a national scale. The emphasis on community engagement is likely to be an important contributor to the success of LSIC.…”

Section: What Are the Main Strengths And Weaknesses?mentioning

confidence: 99%

Cohort Profile: Footprints in Time, the Australian Longitudinal Study of Indigenous Children

2014

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Indigenous Australians experience profound levels of disadvantage in health, living standards, life expectancy, education and employment, particularly in comparison with non-Indigenous Australians. Very little information is available about the healthy development of Australian Indigenous children; the Longitudinal Study of Indigenous Children (LSIC) is designed to fill this knowledge gap.This dataset provides an opportunity to follow the development of up to 1759 Indigenous children. LSIC conducts annual face-to-face interviews with children (aged 0.5–2 and 3.5–5 years at baseline in 2008) and their caregivers. This represents between 5% and 10% of the total population of Indigenous children in these age groups, including families of varied socioeconomic and cultural backgrounds. Study topics include: the physical, social and emotional well-being of children and their caregivers; language; culture; parenting; and early childhood education.LSIC is a shared resource, formed in partnership with communities; its data are readily accessible through the Australian Government Department of Social Services (see http://dss.gov.au/lsic for data and access arrangements). As one of very few longitudinal studies of Indigenous children, and the only national one, LSIC will enable an understanding of Indigenous children from a wide range of environments and cultures. Findings from LSIC form part of a growing infrastructure from which to understand Indigenous child health.

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Section: What Are the Main Strengths And Weaknesses?mentioning

confidence: 99%

Cohort Profile: Footprints in Time, the Australian Longitudinal Study of Indigenous Children

2014

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“…Being motivated to continue to participate may be influenced by whether a participant believes the study is interesting, important, or relevant to them . One of the key strategies for retention in the Australian Aboriginal Birth Cohort study was partnerships with community members with local knowledge who were involved in all phases of the follow‐up . Retention rates of 86% at 11‐year follow‐up and 72% at 18‐year follow‐up were reported which demonstrates the potential of a direct approach to PPI.…”

Section: Measurementmentioning

confidence: 99%

Public and patient involvement in quantitative health research: A statistical perspective

Hannigan

2018

Health Expectations

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BackgroundThe majority of studies included in recent reviews of impact for public and patient involvement (PPI) in health research had a qualitative design. PPI in solely quantitative designs is underexplored, particularly its impact on statistical analysis. Statisticians in practice have a long history of working in both consultative (indirect) and collaborative (direct) roles in health research, yet their perspective on PPI in quantitative health research has never been explicitly examined.ObjectiveTo explore the potential and challenges of PPI from a statistical perspective at distinct stages of quantitative research, that is sampling, measurement and statistical analysis, distinguishing between indirect and direct PPI.ConclusionsStatistical analysis is underpinned by having a representative sample, and a collaborative or direct approach to PPI may help achieve that by supporting access to and increasing participation of under‐represented groups in the population. Acknowledging and valuing the role of lay knowledge of the context in statistical analysis and in deciding what variables to measure may support collective learning and advance scientific understanding, as evidenced by the use of participatory modelling in other disciplines. A recurring issue for quantitative researchers, which reflects quantitative sampling methods, is the selection and required number of PPI contributors, and this requires further methodological development. Direct approaches to PPI in quantitative health research may potentially increase its impact, but the facilitation and partnership skills required may require further training for all stakeholders, including statisticians.

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“…Across the NT, many (100+) varied dialects are spoken, with English often the second or third language. 24,25…”

Section: Geographical Settingmentioning

confidence: 99%

Computerised emotional well-being and substance use questionnaires in young Indigenous and non-Indigenous Australian adults

et al. 2020

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Background: Mental health disorders rank among the most substantial causes of morbidity and mortality worldwide. Almost half of Australian adults experience mental illness at some point in their lifetime, with Indigenous Australians disproportionally affected. Thus, it is imperative that effective, acceptable screening tools are used, which are tailored to the target population. Objectives: This research investigates the methodology of computerised questionnaires in assessing the emotional well-being and substance use in Indigenous and non-Indigenous young adults. Methods: Cross-sectional data from young adults (21–28 years) in the Life Course Program, Northern Territory, Australia, are presented. Through an extensive consultation process, validated questionnaires were adapted to a computerised format suitable for both remote and urban residing Indigenous and non-Indigenous adults. Results: Of the 576 participants (459 Indigenous, 117 non-Indigenous) available for assessment, high consent rates were seen, with completion rates >86%. One in three young adults in this cohort were highlighted as ‘at risk’ of psychological distress, and one in five as ‘at risk’ of suicidal ideation or self-harm. Conclusion: The target population of this study were at a critical age with high levels of psychological distress and suicidal ideation reported, particularly in Indigenous young adults. This simple, user-friendly, pictorial programme allowed assessment of a sensitive topic anonymously, while simultaneously collating data and identifying those at high risk, irrespective of literacy level or cultural background.

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

Cited by 19 publications

References 19 publications

Cohort Profile: Footprints in Time, the Australian Longitudinal Study of Indigenous Children

Cohort Profile: Footprints in Time, the Australian Longitudinal Study of Indigenous Children

Public and patient involvement in quantitative health research: A statistical perspective

Computerised emotional well-being and substance use questionnaires in young Indigenous and non-Indigenous Australian adults

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