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Care Around Stillbirth and Neonatal Death (CASaND) Clinical Practice Guideline

Provision of culturally responsive care

Australia and Aotearoa New Zealand have socioculturally diverse populations, and care around stillbirth and neonatal death must be culturally responsive. Some groups will have experienced extensive trauma and loss and a trauma-informed approach is essential. Healthcare professionals need awareness and understanding of different cultural, religious, and spiritual belief systems and approaches to life, birth, and death. It is also necessary for healthcare professionals to be aware of the continued negative impacts of colonisation for Indigenous peoples, in this case Aboriginal and Torres Strait Islander peoples and Māori, which result in many forms of trauma. Provision of culturally responsive and trauma-informed care can help families/whānau feel safer to express their religious, cultural, and spiritual needs, traditions, and rituals.

“When I was first told about Bub, everything stopped. Like time just stopped and I didn’t know what they meant when they said Bub had no heartbeat.”

Parent quote from the Jiba Pepeny (Star Baby) booklet.

It is essential that care is always provided within a cultural context, acknowledging the potential cumulative experience of complex trauma (including intergenerational trauma) and existing mental health disorders, particularly complex psychological trauma.71-73 There is limited evidence on how to provide culturally sensitive care to meet the needs of parents and family/whānau members from culturally diverse backgrounds.71,74 However, these communities, including Aboriginal and Torres Strait Islander women, Māori women, and families from migrant and refugee backgrounds, are at greatest risk of perinatal loss.71,75-77

In Australia, the National Strategic Framework for Aboriginal and Torres Strait Islander People’s Mental Health and Social and Emotional Wellbeing 2017–202378 provides culturally appropriate guidance for clients, consumers, service providers, policy makers, advocates, and researchers. The nine guiding principles of the framework reflect the holistic and whole-of-life definition of health held by Aboriginal and Torres Strait Islander peoples.

In Aotearoa New Zealand there are several health and wellbeing frameworks grounded in te reo Māori (the Māori language) can provide guidance to healthcare professionals. The interpretation and application of such frameworks should be approached carefully in collaboration with Māori to avoid misinterpretation, and tokenistic application.    

The National Stillbirth Action and Implementation Plan79 contains two actions specific to reducing rates of stillbirth among Aboriginal and Torres Strait Islander women and among some groups of migrant and refugee women:

  • ensuring culturally safe stillbirth prevention and care for Aboriginal and Torres Strait Islander women
  • ensuring culturally and linguistically appropriate models for stillbirth prevention and care for migrant and refugee women.

In Aotearoa New Zealand, the Perinatal and Maternal Mortality Review Committee (PMMRC) has been working to bring attention to the inequities within the health care system that disproportionately affect Māori women. One of the four priority recommendations included in the 2022 report69 of the PMMRC concerns the establishment of regulatory bodies to mandate cultural safety education for all individuals working across all areas of the maternity and neonatal workforce. Another recommendation asks government agencies to address the impact of structural racism.

Communication and decision making

Good communication is essential for the provision of culturally responsive and trauma-informed care. It is important to be aware of terminology and language and acknowledge that some words such as ‘stillbirth’ do not translate in other languages.80 For example, in Australia, Aboriginal families refer to grief, loss, and the healing process as Sorry Business and may refer to a stillbirth as ‘a Sorry Business baby’. Being cognisant of language and terminology that is important to parents and family/whānau is an essential aspect of providing respectful and responsive care around perinatal loss.

Asking parents and family/whānau to be responsible, solely, for decisions involving the life and death of their unborn or newborn baby may not be acceptable for some cultural groups.81 In some cultures, it is not common for the woman to be the decision maker.81-83 Information should be provided to both parents and their family/whānau because decisions may be shared. For example, in Māori culture, the baby is a recognised part of the wider whānau, who are often part of decision-making processes.

Some cultural groups may have taboos against talking about death and expressing grief in public, particularly relating to stillbirth.84

Aboriginal and Torres Strait Islander families may need space to perform ceremonies such as a smoking ceremony and other ‘Sorry Business’ rituals. Māori whānau may need space and time for karakia and the observation of tikanga related to caring for the baby, woman and whānau. The diversity across Aboriginal and Torres Strait Islander cultures highlights the need for healthcare professionals to understand the significance of birthing and passing away on Country.85

Bereavement support and resources should be given to “Elders and senior health workers in communities to enable easy [care provision and handover]”

Indigenous healthcare provider, Australia.87

Across cultures, and within migrant and refugee populations, parents and family/whānau may discuss varying beliefs and understanding of the reason for stillbirth or neonatal death. It is important that healthcare professionals do not make cultural generalisations, make assumptions, or dismiss religious, cultural, and/or spiritual beliefs held by parents and family/whānau. What is critical at every step is that healthcare professionals ask parents about their needs, seek guidance from them, and facilitate the support they need.

Within maternal and newborn services, cultural support is usually accessible in person or through various other recommended resources,71 which should be culturally and linguistically appropriate and available in a range of formats such as print, audio, and digital.71,80,85-87

It is important to acknowledge the status of Elders, religious/spiritual advisors and other important community members and their roles in ceremonies and supporting each family/whānau. Religious advisors/supporters may be involved in the care and support of bereaved parents and family/whānau.88 Support from cultural advisors and Elders from the first point of contact with the maternal and newborn service, until discharge to community care should be considered across all aspects of care.87 For Indigenous cultures, bonds of kinship are of profound importance,  extending beyond the ‘nuclear’ family, including grandparents and other family and community members. In Māori culture, tribal identity also holds great importance for many families/whānau and the distinctive customs and traditions that may be upheld and retained. 

Trauma-informed care considerations

For some parents and families/whānau, the hospital environment is associated with an environment of trauma, particularly for Aboriginal, Torres Strait Islander and Māori families/whānau. Culturally responsive care aims to promote cultural safety and avoid cultural power imbalances of places, people, and policies within maternal and newborn services and other healthcare settings.89

Maternal and newborn services have a responsibility to ensure all healthcare professionals have appropriate training and education in culturally responsive care. This includes awareness and understanding of institutional racism, which may still occur in health settings and lead to further exclusion for Aboriginal and Torres Strait Islanders, immigrants, and refugees.90 The WellMob website contains resources developed by Aboriginal and Torres Strait Islander People to help healthcare professionals understand cultural identity, grief and Sorry Business, appropriate language use, the impact of trauma and intergenerational trauma, and other social and emotional wellbeing issues.

“coming into a hospital and having [the stillbirth of a baby] happen can be really [traumatic]…fear about the hospital environment is deeply ingrained”

Rural and remote care considerations

Parents and families/whānau living in rural and remote regions of Australia and Aotearoa New Zealand face barriers to accessing high quality care and support. While telehealth is widely used for antenatal care, evidence is limited for care around stillbirth and neonatal death. Although provision of home-based paediatric telehealth palliative care is feasible, there are challenges.91 A scoping review of telehealth use by Indigenous populations in Aotearoa New Zealand, Australia, Canada, and the United States acknowledged the range of available telehealth modalities but noted that co-design is critical to acceptance of telehealth among Indigenous communities.92

Evidence-based recommendation 2.13

Evidence quality: moderate confidence

Care must be appropriate to parents’ cultural, religious and/or spiritual needs. Healthcare professionals should:

  • recognise that parents and family/whānau come from a wide range of backgrounds and acknowledge diversity within and between cultural groups
  • avoid cultural stereotypes and culture-based assumptions
  • be aware of and responsive to individual, cultural, religious and/or spiritual approaches to death and expressions of grief and loss
  • be aware of and respond appropriately to families with a history of trauma and loss and previous negative experiences with health services particularly:
    • intergenerational trauma among Aboriginal and Torres Strait Islander families
    • complex trauma among women of refugee background
  • acknowledge the importance of each cultural group’s vital support systems such as kinship and community care for Aboriginal and Torres Strait Islander families and Māori families/whānau.
  • seek advice and support from experienced health workers and engage cultural support services where required.

Social and emotional support for perinatal grief
Section 2 references
Stillbirth Logo
Western Pacific Regional Office of the International Stillbirth Alliance
Coordinating Centre, Stillbirth and Neonatal Death Alliance, Perinatal Society of Australia and New Zealand

Level 3, Aubigny Place
Mater Research Institute
Raymond Terrace,
South Brisbane QLD 4101
The University of Queensland Faculty of Medicine

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