Background
Participants
Setting
Methods
Ethics
Results
Follow up
Challenges and responding strategies
Aim | Responding strategies |
---|---|
To establish project legitimacy and identity | Study tag, “Clan Cohort”, logo and ID cards developed |
Regular updates in local newsletters for Aboriginal child and family wellbeing services | |
Articles published in Aboriginal and Torres Strait Islander Health Worker Journal | |
Discussions on Indigenous radio stations | |
Institutional Indigenous reference group presentations for consultation and negotiation | |
Opportunistic informal discussion with Aboriginal Health Workers attending workshops and conferences in city | |
Bright cartoon posters with simple English posted around communities with story of the study, its findings and overall long term objectives contributing to developing a sense of history | |
To establish researchers profiles | Continuity of the research team; cohort founder and recruiter still engaged with study, two other senior researchers for 12 years |
Researchers photos attached to leaflets and posters | |
Cartoon posters with recognizable caricatures of the researchers posted around communities | |
To develop community relationships | Developing community relationships with Elders, Aboriginal councils and community health clinics, through phone, mail and personal meetings |
Attending community events, art shows, open days and festivals | |
Sending Christmas cards, thank you notes and study updates with pictures and diagrams to community councils and clinics | |
Use of photo albums from current and previous follow-ups | |
At end of community visit sending summary of de-identified community health findings to Elders, council and health clinic | |
To establish researcher participant relationships | Cohort reference group presentations for advice on all aspects of study |
Cohort participants invited to “Researcher Thank You Day “with media involved | |
Cartoon posters with simple English posted around communities | |
Study aids with large non-verbal visual component accompanied by written information sheets | |
Biomedical results in visual form given to cohort participants | |
Cross-cultural training provided to researchers | |
Limited field staff turnover |
Aim | Responding strategies |
---|---|
To find participants | |
Rural | Key significant people identified in each large community and employed |
List of cohort members thought to be in community sent to them requesting confirmation of participant presence | |
Urban | Door to door visits yielded best results |
Letter useful | |
To positively identify participants | Multiple personal identifiers including unique hospital number, name, sex, date of birth and community residence at time of birth |
Showing photograph to community members | |
Recording of aliases on spread sheet | |
Key Aboriginal community assistants employed with local knowledge of community movements | |
Visits to remote communities with strong kinship ties scheduled close together | |
To use personal images | All participants sign individual consents for image photograph to be taken and for photograph to be used for promotion, publicity and tracing |
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 |