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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