Elsevier

Women and Birth

Volume 32, Issue 1, February 2019, Pages 72-79
Women and Birth

Community engagement in the Aboriginal Families Study: Strategies to promote participation

https://doi.org/10.1016/j.wombi.2018.04.002Get rights and content

Abstract

Background

Aboriginal women and families are under-represented in Australian research on pregnancy and childbirth. The Aboriginal Families Study aimed to investigate the views and experiences of a representative sample of women giving birth to an Aboriginal baby in South Australia between July 2011 and June 2013, using methods designed to respect Aboriginal culture and communities.

Methods

A team of 12 Aboriginal researchers facilitated community engagement and recruitment of Aboriginal and non-Aboriginal mothers of Aboriginal infants in urban, regional and remote areas of South Australia over a two-year period.

Results

A total of 344 women took part, around a quarter of all Aboriginal women giving birth in South Australia in the study period (39% urban, 35% regional and 25% from remote areas). Participants were representative in relation to maternal age (mean age of 25 years, range = 15–43 years). Over half of women (56%) first heard about the study via a member of the fieldwork team making contact with them through community connections. Other major sources of recruitment were: Aboriginal health services/programs (20%) and public maternity hospitals (16%). Almost all of the women (95%) recruited via community networks of the fieldwork team completed the questionnaire. In contrast, 51% of women recruited via public hospitals completed the questionnaire (odds ratio = 0.1, 95% confidence interval 0.0–0.1, p < 0.001).

Conclusions

Aboriginal researchers’ community knowledge and leadership is critical to the conduct of successful Aboriginal health research. High levels of participation in research by ‘harder to reach’ populations are achievable when researchers take time to build relationships and work in partnership with communities.

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)

  • C. Jongen et al.

    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

    (2014)
  • P.T. Bywood et al.

    Improving health in Aboriginal and Torres Strait Islander mothers, babies and young children: a literature review

    (2015)
  • L. Gubhaju et al.

    Factors relating to participation in follow-up to the 45 and up study in Aboriginal and non-Aboriginal individuals

    BMC Med Res Methodol

    (2016)
  • Australian Institute of Health Welfare

    Australia’s mothers and babies 2015—in brief. Perinatal statistics series no. 33. Cat no. PER 91

    (2017)
  • M.D. Humphrey et al.

    Maternal deaths in Australia 2008–2012 (AIHW Cat. no. PER 70; maternal deaths series no. 5)

    (2015)
  • J. Fairthorne et al.

    Early mortality from external causes in Aboriginal mothers: a retrospective cohort study

    BMC Public Health

    (2016)
  • I. Ibiebele et al.

    Gestational age specific stillbirth risk among Indigenous and non-Indigenous women in Queensland, Australia: a population based study

    BMC Pregnancy Childbirth

    (2016)
  • N.A. Hodyl et al.

    The impact of Aboriginal status, cigarette smoking and smoking cessation on perinatal outcomes in South Australia

    Med J Aust

    (2014)
  • L. Westenberg et al.

    Aboriginal teenage pregnancies compared with non-Aboriginal in South Australia 1995 –1999

    Aust N Z J Obstet Gynaecol

    (2002)
  • S. Eades et al.

    Bibbulung Gnarneep (‘solid kid’): causal pathways to poor birth outcomes in an urban Aboriginal birth cohort

    J Paediatr Child Health

    (2008)
  • E. Comino et al.

    Risk and protective factors for pregnancy outcomes for urban Aboriginal and non-Aboriginal mothers and infants: the Gudaga cohort

    Matern Child Health J

    (2012)
  • Cited by (10)

    View all citing articles on Scopus
    View full text