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Table 3 Aboriginal Birth Cohort : data collection, challenges and strategies

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

Aim

Challenges

Responding strategies

To gain access to participants

Rural

 

Vast, sparsely populated area remote communities

Priority of dry season community assessments

Poor unsealed roads and runways

Self-sufficient four wheel drive travel, fuel, food, water and satellite phone

3-4 months monsoon flooding of roads and airstrips

Researchers trained in four wheel driving

Local research assistants help navigate unmarked roads to community

 

Road travel supplemented by light aircraft charter or commercial travel to larger hubs

 

A research assistant with pilots licence an advantage

Urban

 

Failure to respond to letter

Door to door transport provided

Difficulties getting to appointments

Central clinic used for assessment

To consult and negotiate with communities to gain approval and fit with community activities

Multiple and support required

Generic flow chart developed to be used for each community (Figure 2)

To organise researcher team and satisfy needs

Limited space

Small multi-skilled research team

Limited food outlets

Personal breakfast and lunch food, team roster for night meals

To transport equipment

Space and weight restrictions

Light equipment e.g., hand held ultrasound and vitalograph

 

Researchers’ personal possessions limited

Travel unsealed rough roads

Robust equipment purchased and wrapped in bubble wrap

To have constant power supply

Power unreliable in communities

All equipment capable of running with battery power

To explain procedures

English second language, participants unfamiliar with scientific terms and procedures

Visual aids, pictures drawings and demonstrations

Simple English assisted by employment of local Aboriginal

assistant

Explanations in groups, max 4 gender matched with researcher

To collect data

Participants shy and unfamiliar with procedures

Siblings, cousins and friends data collection scheduled together for procedures

Growth and nutritional data considered first priority

Triage of data collection making sure primary growth and nutritional data always obtained

Lack of private space

Researchers carry multiple sarong lengths to screen off private spaces

To do a venepuncture

Participants scared of procedure

Local anaesthetic cream used

Observation of others consenting to be watched during procedure

To transport biological specimen to distance laboratory

Preserving blood and urine samples

Blood centrifuged at point of collection

Serum separated and placed in specific testing tubes

Specimens maintained at low temperature in cold storage boxes or fridges

Transported to central laboratory on government planes from hub if delays expected

To gain informed consent

English second language, participants unfamiliar with scientific terms and procedures

Staged consent form (Additional file 1) accompanied by visual aids explained by gender matched research assistant

To avoid clashing with community activities to

Ceremonies and “sorry business” Other agency and government department visits

Day before a planned community visit check still appropriate to visit

Flexibility of researchers to change plans at short notice to accommodate unexpected traditional ceremonies and other important community visitors

To use local Aboriginal interpreters and research assistant

Kinship and avoidance issues

Researchers understand and accommodate kinship and avoidance issues when working with Aboriginal people in a community

Reimbursement for time spent

Concerns of coercion or inappropriate use of given money

Food and drink after fasting

Wave-3 Canvas bag with wrist band and water bottle with study logo, tooth brush, tooth paste and health promotion flyers

Later, urban participants given $AUD20 voucher for retail department store