Community engagement in the Aboriginal Families Study: Strategies to promote participation
Introduction
Research in Indigenous communities has had a bad history.1, 2, 3, 4, 5, 6, 7 As a result, there is often mistrust and resistance from Aboriginal and Torres Strait Islander people regarding participation in research.3, 7 Respecting community experiences of research requires awareness of the broader social, cultural and political contexts of Aboriginal people, families and communities.6, 7, 8 Over the past decade, the literature on Aboriginal women’s and children’s health has expanded.9, 10 However, there remain major gaps in research evidence to guide health policy and health services,10 and Aboriginal people continue to be under-represented in population-based and clinical research.11
In Australia, routinely collected perinatal data show that Aboriginal women experience rates of pregnancy complications, stillbirth, preterm birth, small for gestational age infants and neonatal death that are two to three times higher than other Australian women.12, 13, 14, 15, 16, 17 It is often assumed that disparities in health outcomes are primarily the experience of Aboriginal families living in remote communities. However, studies undertaken in urban Aboriginal populations also show marked disparities in maternal, newborn and perinatal outcomes.18, 19, 20
Several states and territories in Australia have implemented regional programs designed to improve maternal, perinatal and infant outcomes among Aboriginal and Torres Strait Islander populations. Many of these programs have involved health promotion, information and support provided by Aboriginal health workers working alongside midwives with the aim of providing culturally competent care to Aboriginal families.21, 22, 23, 24, 25, 26 However, only a handful of studies have invited Aboriginal women to talk about pregnancy care or sought information from women about social factors affecting their health and wellbeing during pregnancy.
The Aboriginal Families Study was developed in response to gaps in the available evidence to inform policy and practice. The study has been guided by an Aboriginal Advisory Group through all stages of the research, from study conception to interpretation and dissemination of the results.27 Several papers reporting primary outcomes from the research have already been published.28, 29, 30, 31, 32 The aims of the current paper are to: (i) describe the methodological approach taken to community engagement and recruitment of study participants; (ii) reflect on what worked and what did not work to engage women living in urban, regional and remote parts of South Australia; and (iii) consider implications for future research involving Aboriginal and other ‘harder to reach’ populations.
Section snippets
Community consultation
In 2006 researchers at the Murdoch Children’s Research Institute met with Board Members from the Aboriginal Health Council of South Australia Ltd. to discuss the potential for working together on a research project. The Aboriginal Health Council of South Australia is a non-profit organisation that provides advocacy, training and support to Aboriginal community controlled health services. The project now known as the Aboriginal Families Study grew out of these discussions. Members of the
Results
Members of the fieldwork team spoke to 418 women to register their interest in taking part in the study. Of these, 348 (83%) completed the questionnaire. The final sample included 344 women: one woman was excluded because all of her antenatal care was outside of South Australia and three women were excluded because of incomplete consent forms. The majority of participants were Aboriginal (90%, 311/344 women). Four women identified as both Aboriginal and Torres Strait Islander and four as Torres
Discussion
As noted in a recent commentary in the Medical Journal of Australia, involving ‘harder to reach’ populations in research is not simply a matter of employing interpreters and researchers fluent in community languages.35 It is also about developing research in thorough and inclusive ways that respect community knowledge and priorities. The Aboriginal Families Study was preceded by extensive community consultation and developed keeping community and policy goals in mind right from the start, as
Conclusions
Our experiences of working together to engage Aboriginal women and communities in the Aboriginal Families Study demonstrate the importance of valuing and integrating Indigenous knowledge into methods used for public health research. Aboriginal researchers’ community knowledge and leadership were critical to the success of the study, as were the steps taken to consult and build relationships with Aboriginal communities and organisations across South Australia, prior to developing and
Competing interests
The authors declare that they have no competing interests.
Availability of data and materials
Due to ethical restrictions, the authors are unable to make the raw data set used for this manuscript publicly available.
Ethics approval and consent to participate
Ethics approval was obtained from the Aboriginal Human Research Ethics Committee of South Australia (04-09.290), the South Australian Department of Health (298/06/2012), the Women’s and Children’s Health Network (2335/12/16), the Lyell McEwin Hospital (2020281) in Adelaide and the Royal Children’s Hospital (29076A) in Melbourne. All women taking part in the study gave their written or verbal consent, following procedures approved by institutional ethics committees. Young women (aged 14–17) were
Funding
The Aboriginal Families Study is funded by the National Health and Medical Research Council (project grant ID1004395, 2011–2013), the Rio Tinto Aboriginal Fund, and SA Health, and supported by the Victorian Government’s Operational Infrastructure Support Program. SB was supported by a National Health and Medical Research Council Career Development Fellowship (ID491205, 2008–2011), an Australian Research Council Future Fellowship (2012–2015) and a National Health and Medical Research Council
Authors’ contributions
All authors read and approved the final manuscript.
Acknowledgements
The authors respectfully acknowledge the Aboriginal Custodians of the Lands and Waters of Australia. We thank the many Aboriginal families who have played a role in development of the Aboriginal Families Study through the community consultation and development of the questionnaire; the women who have taken part; their communities and the staff in the many agencies that have supported the study. We would also like to thank members of the Aboriginal Advisory Group for the study and members of the
References (44)
Dirty questions: indigenous health and ‘Western research’
Aust N Z J Public Health
(2001)Birthweight changes in the pilot phase of the Strong Women Strong Babies Strong Culture Program in the Northern Territory
Aust N Z J Public Health
(2001)- et al.
Maternity care with the women’s business service at the Mildura Aboriginal Health Service
Aust N Z J Public Health
(2004) - et al.
Primary care for Aboriginal women and children in the year after birth: findings from a population-based study in South Australia
Aust N Z J Public Health
(2016) Decolonising methodologies: research and indigenous peoples
(1999)Can you hear us now? Voices from the margin: using indigenous methodologies in geographic research
Geogr Res
(2007)Ways of knowing, being and a theoretical framework and methods for Indigenous and Indigenist research
- et al.
Indigenous ways of knowing: implications for participatory research and community
Am J Public Health
(2008) - et al.
Adapting western research methods to indigenous ways of knowing
Am J Public Health
(2013) - et al.
Putting the users of research in the driver’s seat: the Co-operative Research Centre for Aboriginal Health’s new approach to research development
Aust Aborig Stud
(2006)
Aboriginal and Torres Strait Islander maternal and child health and wellbeing: a systematic search of programs and services in Australian primary health care settings
BMC Pregnancy Childbirth
Improving health in Aboriginal and Torres Strait Islander mothers, babies and young children: a literature review
Factors relating to participation in follow-up to the 45 and up study in Aboriginal and non-Aboriginal individuals
BMC Med Res Methodol
Australia’s mothers and babies 2015—in brief. Perinatal statistics series no. 33. Cat no. PER 91
Maternal deaths in Australia 2008–2012 (AIHW Cat. no. PER 70; maternal deaths series no. 5)
Early mortality from external causes in Aboriginal mothers: a retrospective cohort study
BMC Public Health
Gestational age specific stillbirth risk among Indigenous and non-Indigenous women in Queensland, Australia: a population based study
BMC Pregnancy Childbirth
The impact of Aboriginal status, cigarette smoking and smoking cessation on perinatal outcomes in South Australia
Med J Aust
Aboriginal teenage pregnancies compared with non-Aboriginal in South Australia 1995 –1999
Aust N Z J Obstet Gynaecol
Bibbulung Gnarneep (‘solid kid’): causal pathways to poor birth outcomes in an urban Aboriginal birth cohort
J Paediatr Child Health
Risk and protective factors for pregnancy outcomes for urban Aboriginal and non-Aboriginal mothers and infants: the Gudaga cohort
Matern Child Health J
Cited by (10)
Trusting relationships and learning together: A rapid review of Indigenous reference groups in Australian Indigenous health research
2023, Australian and New Zealand Journal of Public HealthPatterns of Health and Health Service Use in a Prospective Cohort of Aboriginal and Torres Strait Islander Children Aged 5–9 Years Living in Urban, Regional and Remote Areas of South Australia
2023, International Journal of Environmental Research and Public HealthA Comprehensive Review of Optimal Approaches to Co-Design in Health with First Nations Australians
2022, International Journal of Environmental Research and Public Health