Oral Presentation Women's Health Forum 2021

Cape York Aboriginal and Torres Strait Islander women’s experience of stillbirth a collaborative approach to researching a sensitive issue (#20)

Susan Vlack 1 2 , Diana Jans 3 , Deanna Stuart-Butler 3 , Fran Boyle 3 4 , Vicki Flenady 3 , Johanna Neville 3
  1. School of Public Health, University of Queensland, Brisbane, Queensland, Australia
  2. Public Health Unit, Metro North Hospital and Health Service, Brisbane, Queensland, Australia
  3. NHMRC Stillbirth Centre for Research Excellence, Mater Research Institute, Brisbane, Queensland, Australia
  4. Institute for Social Science Research, University of Queensland, Brisbane, Queensland, Australia

When a woman and family are going through sorry business after having a stillborn baby, they suffer tremendous grief and loss. It is also a difficult time for their health carers. Stillbirth is a sensitive issue in Aboriginal and Torres Strait Islander communities, there is little open discussion. While identifiable as Women’s Business, our engagement suggests it is of concern to wider community groups. Members of the Aboriginal and Torres Strait Islander Advisory Group of the Centre of Research Excellence in Stillbirth1 have collaborated with Apunipima Cape York Health Council2 to explore this area in a community-based research project. This presentation describes the processes undertaken.

The Advisory Group recognised a gap in information available for this group of women who have a decreasing but still disproportionate burden of stillbirth in Australia,3,4 and may have particular needs requiring consideration in care after stillbirth.5   In keeping with NHMRC guidelines6, the research plan was developed collaboratively and guided by Apunipima’s Research Governance Group. It focused on community level permission and direction of activity, appropriate data collection using a yarning method7, community ownership of results, and community benefit. Potential harm was addressed in the plan by including active follow up of affected women interviewed, and support by Social and Emotional Wellbeing Program (consistent with national framework)8 or Employee Assistance Program.

Beginning discussions in community via the community-controlled health service led to learn from local managers, workers and strong community advocates, some of whom have been affected by family experience of stillbirth. We have been able to join staff in-service sessions to conduct interviews and focus groups, and have been steered towards Indigenous Community Councils, Elders, Indigenous Health Workers and existing women’s and mental health support groups.

COVID-19 restrictions9 have presented a necessary further challenge, extending timelines and increasing our agility for opportunistic planning.

  1. 1. Centre of Research Excellence in Stillbirth: Leading national research, resources and evidence-based advice dedicated to preventing stillbirth and improving health and social outcomes for women. Mater Research Institute, South Brisbane, Qld https://stillbirthcre.org.au/ (accessed 14 April 2021)
  2. 2. Apunipima Cape York Health Council: Aboriginal Health in Aboriginal Hands. Bungalow, Qld http://www.apunipima.org.au/ (accessed 14 April 2021)
  3. 3. Ibiebele, I, Coory, M, Boyle, FM, Humphrey, M, Vlack, S, & Flenady, V. (2015). Stillbirth rates among Indigenous and non‐Indigenous women in Queensland, Australia: is the gap closing? BJOG : an International Journal of Obstetrics and Gynaecology, 122(11), 1476–1483. https://doi.org/10.1111/1471-0528.13047
  4. 4. Australian Institute for Health and Welfare, Stillbirths and Neonatal Deaths in Australia 2015 and 2016: In Brief, (2019) Stillbirths and neonatal deaths in Australia 2015 and 2016: in brief (full publication;21June2019Edition)(AIHW) (apo.org.au). (Accessed 16 April)
  5. 5. Flenady V, Oats J, Gardener G, Masson Vicki, McCowan Lesley, Kent A, Tudehope David, Middleton P, Donnolley N, Boyle F, Horey D, Ellwood D, Gordon A, Sinclair L, Humphrey M, Zuccollo J, Dahlstrom J, Mahomed K, Henry S, Khong Y for the PSANZ Care around the time of stillbirth and neonatal death guidelines group. Clinical Practice Guideline for Care Around Stillbirth and Neonatal Death. Version 3.4, Section 3.9 Cultural Safety . NHMRC Centre of Research Excellence in Stillbirth. Brisbane, Australia, January 2020 Clinical-Practice-Guidelines-for-Care-Around-Stillbirth-and-Neonatal-Death2-2.pdf (stillbirthcre.org.au) (accessed 16 April, 2021)
  6. 6. National Health and Medical Research Council, Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: Guidelines for researchers and stakeholders (2018), Commonwealth of Australia: Canberra. Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities | NHMRC (accessed 16 April, 2021)
  7. 7. Melissa Walker, Bronwyn Fredericks, Kyly Mills & Debra Anderson (2014) “Yarning” as a Method for Community-Based Health Research With Indigenous Women: The Indigenous Women's Wellness Research Program, Health Care for Women International, 35:10, 1216-1226, DOI: 10.1080/07399332.2013.815754
  8. 8. Commonwealth of Australia 2017. National Strategic Framework for Aboriginal and Torres Strait Islander Peoples’ Mental Health and Social and Emotional Wellbeing. Canberra: Department of the Prime Minister and Cabinet. National Strategic Framework for Aboriginal and Torres Strait Islander Peoples’ Mental Health and Social and Emotional Wellbeing 2017-2023 (niaa.gov.au) (accessed 16 April, 2021)
  9. 9. Superceded - Restricted Access to Remote Communities Direction (Queensland Chief Health Officer, 11 June 2020 Superseded - Restricted Access to Remote Communities Direction | Queensland Health (accessed 16 April, 2021)