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| Aboriginal and Torres Strait Islander peoples | A person of Aboriginal or Torres Strait Islander descent who identifies as an Aboriginal or Torres Strait Islander and is accepted as such by the community in which they live. We acknowledge that some groups prefer the term ‘First Nations’ or ‘First Australians’ people to acknowledge Aboriginal and Torres Strait Islander people as the traditional custodians of this land.39 |
| ACOG | American College of Obstetricians and Gynecologists |
| antenatal | Before birth; pregnancy; prenatal. |
| anticipatory grief | Anticipatory grief, also referred to as anticipatory loss or preparatory grief, is the distress a person may feel in the days, months or even years before the death of a loved one or other impending loss. |
| anxiety | Excessive worry and feelings of apprehension. |
| anxiety disorder | Anxiety disorders are a cluster of mental disorders characterised by significant and uncontrollable feelings of anxiety and feelings such that a person’s social, occupational, and personal function are significantly impaired. |
| case-control study | Case-control studies are used to evaluate multiple risk factors associated with a particular disease or outcome. They are particularly useful when the condition is rare. |
| chromosome microarray (CMA) | A chromosome microarray (also known as a molecular karyotype) is a diagnostic tool that is used to identify genetic causes of illness and developmental problems. It is used to quantify the number of copies of thousands of segments of DNA simultaneously. |
| confidence intervals (95% CI) | A range of values about which there is a 95% chance that it includes the true value. For example, if the stillbirth rate is 5.4 per 1,000 total births and the 95% confidence interval is 5.3 to 5.5 per 1,000 total births, there is a 95% chance that the actual stillbirth rate lies between 5.3 and 5.5 per 1,000 total births. |
| congenital anomaly | A physical malformation, chromosomal disorder or metabolic abnormality that is present at birth. |
| continuum of care | A coordinated and integrated approach to care that tracks an individual during and after the time they are under the care of a maternal and newborn service. For perinatal loss care, this may start at preconception. |
| cultural, religious and/or spiritual considerations | Cultural beliefs, practices, and customs that healthcare professionals should consider when providing individualised care including, supporting shared decision making and the social and emotional wellbeing of parents and families/whānau. This includes religious and spiritual beliefs, practices, and customs. |
| cultural safety | The concept of cultural safety originated in response to the harmful effects of colonisation and the ongoing legacy of colonisation on the health and healthcare of Māori people – in particular in mainstream healthcare services. In Australia, for the purpose of developing a monitoring framework for Aboriginal and Torres Strait Islander health, cultural safety is defined with reference to the experience of the Indigenous healthcare consumer, of the care they are given, their ability to access services and to raise concerns. Essential features of cultural safety include an understanding of one’s culture; an acknowledgment of difference; and a requirement that caregivers are actively mindful and respectful of this difference; and the ability to recognise, address and prevent racism. The presence or absence of cultural safety is determined by the experience of the care recipient and is not defined by the caregiver. |
| depression | Persistent feelings of sadness, hopelessness, and worthlessness, as well as loss of interest in previously pleasurable activities. |
| designated healthcare professional | A dedicated role within a maternal and newborn service with responsibility for ensuring a coordinated approach to care. This could be a social worker, counsellor, Aboriginal health practitioner, or midwife. |
| disenfranchised grief | Grief that society (or some element of it) limits, does not expect, or may not allow a person to express. Disenfranchised grief may isolate the bereaved individual from others and thus impede recovery.40 |
| evidence | Data collected from research studies that helps answer a research question. Evidence may be synthesised from a body of work about a research question. |
| evidence-based recommendation (EBR) | A recommendation formulated after a systematic review of the evidence, with a clear linkage from the evidence base to the recommendation using GRADE methods. |
| family | Family refers to anyone who is identified by the parents as family, including siblings and grandparents. |
| fetal | In this guideline, the term fetal refers to an unborn baby of any gestation. |
| fetal death | Death of a baby before birth. The term is often used synonymously with stillbirth |
| fetal growth restriction (FGR) | FGR is often used interchangeably with ‘small for gestational age’ (SGA). SGA is defined as a baby with antenatal ultrasound biometry assessment less than the 10th centile for gestational age according to population-based birthweight centiles. FGR strictly refers to babies who have not reached their growth potential during pregnancy. They are frequently but not always SGA. |
| flow cytometry | A widely used, laser-based technique for analysing the expression of cell surface and intracellular molecules. |
| genome sequencing | A scientific test that can help identify the cause of health and developmental problems. In many cases, clinical exome sequencing or whole genome sequencing is used to seek answers where other testing has failed to find a cause. |
| GRADE | Grading of Recommendations Assessment, Development and Evaluation |
| guideline | Guidance documents containing recommendations based on the best available evidence, developed by a multidisciplinary team, and informed by experts, consumers, and other individuals with an interest in the guideline. |
| healthcare professional | All those who provide health care and related medical services to bereaved parents and family/whānau, including doctors, nurses, Aboriginal health workers and allied health professionals. |
| Indigenous | Refers to Aboriginal and Torres Strait Islander people and Māori people. |
| institutional racism | Embedding of practices, policies or processes within systems or institutions that maintain and reproduce avoidable and unfair inequalities. |
| intrauterine fetal death (IUFD) | Death of a baby in utero after 20 weeks gestation or weighing at least 400g at birth. See stillbirth. |
| Kleihauer–Betke | A blood test performed on the mother’s blood to identify whether substantial bleeding has occurred from the unborn baby into the mother’s circulation. |
| life-limiting condition | An incurable illness that is likely to cause death. |
| low- and middle-income country settings | The World Bank classifies economies for analytical purposes into four income groups: low, lower-middle, upper-middle, and high income. Definitions for the 2024 fiscal year, calculated using the World Bank Atlas method, based on gross national income (GNI) per capita in 2022, are: – low-income economies: GNI of US$1,135 or less – lower middle-income economies: GNI between US$1,136 and US$4,465 – upper middle-income economies: GNI between US$4,466 and US$13,845 – high-income economies: GNI of US$13,846 or more. |
| Māori | We refer to Māori as the Indigenous people of Aotearoa New Zealand. We acknowledge language, customary practices, and whānau inclusivity.42 |
| maternal and newborn services | For the purposes of this guideline, we use maternal and newborn services to refer to primary care, obstetric and midwifery practice, and public and private hospitals. This includes interfaces between hospital-based services and the community and the longer-term support needs of parents and families/whānau. |
| mental health | A state of mental wellbeing that enables people to cope with the stresses of life, realise their abilities, learn well and work well, and contribute to their community.43 |
| microaggression | Commonplace verbal, behavioural or environmental slights, whether intentional or unintentional, that communicate hostile, derogatory, or negative attitudes toward stigmatised or culturally marginalised groups. |
| minimally invasive tissue sampling (MITS) | A postmortem procedure for obtaining samples from key organs and body fluids, using biopsy needles. Samples are subsequently analysed using histopathological and microbiological methods. MITS may be used where autopsy is not available or unacceptable to parents as part of a less invasive investigation protocol in low- and middle-income country settings. |
| multidisciplinary team | |
| National Stillbirth Action and Implementation Plan (The Plan) | The first national plan to strategically address the issue of stillbirth in Australia (referred to in this guideline as The Plan). The Plan is funded by the Australian Government Department of Health and Aged Care and published in December 2020. The primary goal is to reduce stillbirth rates in Australia by 20% or more within the five years from publication of the Plan. |
| neonatal death | The death of a live born baby in the first 28 days of life. For statistical purposes, neonatal death is defined as the death of a live born baby of 20 or more completed weeks of gestation or of 400 g or more birthweight within 28 days of birth. |
| NHMRC | National Health and Medical Research Council |
| perinatal full autopsy | A specialist medical examination undertaken following stillbirth or neonatal death, including external examination, examination of all the internal organs (usually via two or more incisions), examining small samples of tissue under a microscope, medical photographs, and other tests such as genetic investigations. Tests may also be done for infection and other possible teratogens, causes of death or complications. The placenta will usually also be examined. |
| perinatal limited autopsy | A limited autopsy involves only the examination of those organs specified on the autopsy consent and includes where tissue may be obtained from the baby for examination for suspected abnormalities. |
| perinatal loss | A term that encompasses all pregnancy loss including early pregnancy loss/miscarriage (including ectopic or molar pregnancy) before 20 weeks’ gestation, stillbirth, and neonatal deaths. This guideline uses this term to specify care of bereaved parents and families in maternal and newborn care settings. |
| perinatal mortality audit | A process to document the medical causes of each death and contributing systemic failures to identify solutions and actions. It is not a solution. It is a systematic way of improving quality of care through collecting and analysing data, linking solutions, and ensuring accountability for changes in care. . |
| perinatal palliative care | Perinatal palliative care is a holistic multidisciplinary model of care for both baby and family in the event of a perinatal diagnosis of a life-limiting condition. It aims to provide optimal symptom control and end-of-life care to the baby as well as specialised support to families from diagnosis through to birth, death, and bereavement.44 |
| perinatal pathologist | Pathologist with specialist professional training in examining tissues of pregnancy (placenta, embryo, fetal tissue) to identify cause of death during the perinatal period. Perinatal pathologists are also trained in performing autopsies to investigate causes of neonate death. |
| postmortem | Occurring after death. While often used synonymously with autopsy, postmortem examination/investigation may or may not include an autopsy. |
| post-traumatic stress disorder (PTSD) | PTSD is a treatable anxiety disorder. It happens when fear, anxiety and memories of a traumatic event do not go away. The feelings last for a long time and interfere with how people cope with everyday life. |
| pre-eclampsia | Pre-eclampsia is one of the more common complications of pregnancy and can happen at any time during the second half of pregnancy or the first few days after the birth. The signs of pre-eclampsia are high blood pressure, protein in urine and sudden excessive swelling of the face, hands, and feet. Sudden blurred vision is also a symptom. It is also possible to have pre-eclampsia without having any symptoms at all. |
| PSANZ | Perinatal Society of Australia and New Zealand |
| RANZCOG | Royal Australian and New Zealand College of Obstetricians and Gynaecologists |
| RCOG | Royal College of Obstetricians and Gynaecologists (United Kingdom) |
| RCPA | Royal College of Pathologists of Australasia |
| small for gestational age (SGA) | A baby with a birthweight lower than the 10th centile using population-based birthweight centiles. |
| Sorry Business | In Australia, Aboriginal and Torres Strait Islander peoples refer to grief, loss, and the healing process as Sorry Business. Stillbirth is referred to as ‘a Sorry Business baby’. |
| stillbirth | Birth following the death of an unborn baby of 20 or more completed weeks of gestation or of 400g or more birthweight. |
| Stillbirth CRE | NHMRC Centre of Research Excellence in Stillbirth |
| sudden unexpected deaths in infancy (SUDI) | Sudden and unexpected death of a live born baby, where a cause of death cannot be identified. |
| systematic review | A systematic review collates all empirical evidence that fits pre-specified eligibility criteria to answer a specific research question. The process entails explicit, systematic methods that are selected with a view to minimising bias, to provide more reliable findings from which conclusions can be drawn and decisions made. |
| teratogens | A chemical that increases the occurrence of structural or functional abnormalities in neonates if administered to either parent before conception, to the mother during pregnancy, or directly to the developing baby. |
| termination of pregnancy for medical reasons | When a pregnancy is terminated due to a chromosomal, genetic, or structural anomaly in the baby, or where continuing the pregnancy would risk the health or life of the mother. |
| whānau | Refers to Māori extended family or family group and is the primary economic unit of traditional Māori society. In the modern context the term is sometimes used to include friends who may not have kinship ties to other members.42 |
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Mater Research Institute
Raymond Terrace,
South Brisbane QLD 4101
The University of Queensland Faculty of Medicine