Prevention of stillbirth in Aboriginal and Torres Strait Islander (herein respectfully Indigenous) peoples, and responsive care when such losses occur, are key aims of the Stillbirth Centre of Research Excellence (CRE). Understanding Indigenous communities’ experiences, perceptions and priorities around stillbirth, or Sorry Business Babies, is needed to implement prevention strategies and culturally safe practices in Australian maternity health services.
A collaborative consultation process with Indigenous communities around Australia identified stillbirth prevention and care needs. The project was led by passionate, experienced Indigenous researchers who have deep cultural connections with the lands and communities involved. Researchers were led by the community, who shared their lived experiences and stories of their own communities through yarning. Yarning sessions provided a comfortable, safe space for community members to share stories, ask questions and feel heard. Consultations with healthcare providers also identified learning needs in providing culturally responsive pregnancy care to Indigenous women.
Consultations were held in 18 communities – involving 93 community members and 221 healthcare providers, many of whom were also Indigenous community members – across remote, regional and urban areas in Queensland, Western Australia, Victoria, South Australia and the Northern Territory. Consultations were face to face or online, using yarning interviews, discussion groups and workshops, with some participants having lived experience of Sorry Business Babies.
Findings included the need for better health service engagement and support of families and communities, as well as improved education and resources for both Indigenous and non-Indigenous healthcare providers. Lack of continuity of care was identified as the main barrier in effective prevention, investigation of causes and care for families following stillbirth. This highlights the importance of continuous care for families during the perinatal period, including when a baby does not survive.
Consultations highlighted five priorities:
- Sorry Business Babies/stillbirth care to be family-centred
- ‘our own ways of knowing, being and doing’ to ensure cultural safety
- Birthing on Country principles
- yarning to improve communication
- learning through stories.
An Aboriginal healthcare provider from Cape York in Queensland stated:
Lots of different things can happen and for [a] family to have the shock of their baby dying and then have to go through all these other things ... [saying] ‘I’ve got all these doctors and people wanting me and yet I’ve got all my family, who are wanting me to tell them what happened and how come?’ [There are] lots of pressures. Having that [health service] support, is a really good idea.
Similarly, a bereavement worker from Victoria shared:
It feels like Aboriginal community have some shame job around ... talking about it. At the same time, it feels like health providers are awkward or don’t want to start the conversation in case there are questions they don’t know how to answer. What is required for families is for health providers to be confident and kind in their conversations, as it needs to be talked about.
Co-design workshops were also held to adapt resources, based on the five evidence-based elements of the Safer Baby Bundle, to be culturally responsive. The approach centred Indigenous people’s voices, experiences and needs by using strength-based language and appropriate artwork. Community members took part in co-designing resources to ensure they would be informative, empowering and written in mob’s own ways of knowing, being and doing.
Further recommendations focused on education and training for healthcare providers to support and empower pregnant women and their families. Inclusion of more men in the research process and having an Indigenous male to lead this, as well as having visible male representation in resources, was also recommended.
The Stronger Bubba Born resources will be launched towards the end of this year.