3. Methodology
3.1 Sources of information
3.1.1. Sources of information regarding a death
The Children and Young People (Oversight and Advocacy Bodies) Act 2016 articulates the role and functions of the Committee, and empowers it to obtain information about a case of child death or serious injury from any person (whether or not the person is a state authority, or an officer or employee of a state authority). Using this power, the Committee receives information regarding the death of a child from a range of sources and uses this information in its determinations.
3.1.2. Sources of information regarding birth
The Committee receives the number of live births for each year from Wellbeing SA’s Pregnancy Outcome Unit.
3.1.3. Sources of information regarding population estimates for children and young people in South Australia
The Committee acquires the publicly available number of children and young people resident across the dimensions of calendar year, single year of age, sex, cultural background, and postcode from the Australian Bureau of Statistics (ABS). The ABS provides this information, as well as the estimated resident population, in its five-yearly Census of Population and Housing.
For the purpose of this report, the population of children and young people resident in South Australia by calendar year, single year of age, sex, cultural background, and postcode is interpolated as follows: the counts across single year of age, sex, cultural background and postcode are taken from the census, and assigned to the calendar years as three years before each census to two years after the census. The multiplier needed to get from the census to the estimated resident population for each year is found and then applied to each of the 369,360 cells in the matrix calendar year (15 levels), age (18 levels), sex (2 levels), cultural background (2 levels), and postcode (342 levels). The multiplier is found by dividing the estimated resident population by the census count, and is performed separately for the Aboriginal and non-Aboriginal populations. Note that when re-aggregated, the adjusted count is the same as the estimate resident population.
3.1.4. Sources of information regarding SEIFA
Socio-Economic Indexes for Areas (SEIFA) is a product developed by the ABS that ranks areas in Australia according to relative socioeconomic advantage and disadvantage. The indexes are based on information from the five-yearly census.
For the purpose of this report, the Committee used the Index of Relative Socio-Economic Disadvantage (IRSD). The postcode of the usual residence of each child or young person who died was matched to the appropriate SEIFA/IRSD level extracted from the census nearest their year of death. Deciles were collapsed into quintiles: on this scale, quintile 1 includes areas with the greatest relative socioeconomic disadvantage and quintile 5 includes areas with the least relative socioeconomic disadvantage.
3.2. Committee classifications and definitions
3.2.1. Operational definition of death
The Committee receives information regarding the death of a child or young person in South Australia from three government sources: Births, Deaths and Marriages; the State Coroner’s Court; and the Pregnancy Outcome Unit. The count of deaths in this annual report includes all cases received from these sources with the following exceptions:
- if the Committee understands from the information gathered that the case was a termination of pregnancy
- if the Committee understands that the death occurred after the birth of an infant, prior to 20 weeks gestation.
Where there is disagreement between the sources, the Committee reviews all of the available evidence to arrive at a conclusion.
3.2.2. Cultural background
To differentiate grouping, the ABS uses the categories of ‘Aboriginal’, ‘Torres Strait Islander’, ‘Both Aboriginal and Torres Strait Islander’, ‘Not stated’ and ‘Non-Indigenous’. For the purpose of this report, the Committee collapses these categories into two groups: ‘Aboriginal = ‘Aboriginal’, ‘Torres Strait Islander’, ‘Both Aboriginal and Torres Strait Islander’; and ‘Other’ = ‘Not stated’ and ‘Non-Indigenous’.
It is important to note that the Committee’s determination of the cultural background of a deceased child or young person uses multiple administrative sources, and is a different methodology than that used by the ABS which is based on the self-report of the person completing the census form. There are good reasons to think that these are different16.
16 Gialamas A, Pilkington R, Berry J, Scalzi D, Gibson O, Brown A, Lynch J. Identification of Aboriginal children using linked administrative data: Consequences for measuring inequalities Journal of Paediatrics and Child Health 52 (5), 534-540.
3.2.3. Category of death
In many cases, the Committee has multiple sources of information available about children and young people, and is not limited to the causes of death recorded in post-mortem reports or death certificates. At the time of classifying a death, the Committee will consider all available information.
| Cause | Committee classification |
|---|---|
| Transport-related | Transport-related deaths include deaths resulting from incidents involving a device used for, or designed to be used for, moving people or goods from one place to another. These incidents may involve pedestrians and include railway or water transport. |
| Accidents | Accidents exclude deaths attributed to transport incidents, fires or drowning. Also referred to as deaths from unintentional injuries, these deaths most commonly include accidental: suffocation, strangulation and choking, falls, and poisoning. |
| Suicide |
The Committee’s definition of suicide is: Taking one’s own life, intending to do so. The Committee defines a death as suicide if, after a thorough review of all available evidence, it is satisfied that the young person killed him or herself, intending to take their own life. Since adopting this definition, three cases previously attributed to suicide have been reclassified as accidental deaths, resulting from misadventure. |
| A deliberate act by another causing death |
Describes a range of deaths, including deaths from acts of violence, where a person, by whatever means, causes a child’s death by a deliberate act. While a person’s intent is obviously relevant to issues of criminal liability, for the Committee’s categorisation of deaths, this does not need to be considered. Similarly, there may be cases where the person who causes a child’s death does so as a result of mental illness, leading to a Court finding of mental incompetence. Such cases are also included in this category. It will not always be possible, on the basis of the available evidence, to be certain that a child’s death resulted from a deliberate act by another person. For instance, a child may have serious head injuries causing death, where it is not possible to say that the injuries were deliberately inflicted, as opposed to being caused by an accidental fall. In such cases, upon consideration of all the available evidence, the Committee will decide which is the most likely cause of death. |
| Neglect |
The Committee defines neglect as ‘a death resulting from an act of omission by the child’s carer(s)’ including:
|
| Health-system related | These deaths have been classified as such by the Committee based on written records which may not necessarily be complete. The Committee places a death in this category based on consideration of preventable aspects in the circumstances of the death, and a focus on future prevention strategies rather than an investigation of the cause of death. |
| Sudden unexpected infant death |
Sudden Unexpected Death in Infancy (SUDI) has been described as an ‘umbrella’ term that is used for all sudden unexpected deaths of infants. The definition of SUDI is based on the definition, proposed by Fleming et al. (2000)18, and includes infants from birth to 365 completed days of life whose deaths: Criterion 1: Were unexpected and unexplained at autopsy; Criterion 2: Occurred in the course of an acute illness that was not recognised by carers and/or by health professionals as potentially life-threatening; Criterion 3: Arose from a pre-existing condition that had not been previously recognised by health professionals; or Criterion 4: Resulted from any form of accident, trauma, or poisoning. |
| Sudden infant death syndrome | Sudden Infant Death Syndrome (SIDS) is a term used to describe the sudden and unexpected death of an infant, when the death occurs during sleep, and when the cause of death remains unexplained after a complete autopsy, review of the circumstances of death, and of the infant’s clinical history19. |
17 Lawrence R, & Irvine P. Redefining fatal child neglect. Child Abuse and Prevention, 21, 1-22.
18 Fleming P, Bacon C, Blair B, and Berry PJ. (2000) Sudden unexpected deaths in infancy, the CESDI studies 1993-1996. London: The Stationery Office.
19 Krous H, Beckwith J, Byard R, Rognum T, Bajanowsky T, Corey T, Gutz E, Hanzlik R, Keens T, and Mitchell E. (2004) Sudden infant death syndrome and Unclassified infant deaths: A definitional and diagnostic approach. Paediatrics, 114, 234–238.
3.2.4. Disability
The definition used to determine inclusion as the death of a child or young person aged 1 to 17 years with disability is:
- the child or young person was over one year of age at the time of death
- the child or young person’s daily activities were limited due to their disability, illness, disease or health problem; and
- the child or young person’s daily activities were adversely affected for a period of six months or more.
Where the length of time during which the child or young person’s daily activities were adversely affected was unknown, the case was not included on the register. Cases where the child or young person had a chronic health condition (eg, asthma, epilepsy, diabetes) were only included on the register if other disabilities were present. Some children and young people have multiple types of disability, for example cerebral palsy and epilepsy. Multiple disabilities are recorded for each child or young person, where identified.
| Disability | Committee definition |
|---|---|
| Neuro-degenerative diseases, genetic disorders and birth defects |
This category included all instances of neurodegenerative diseases, genetic disorders and birth defects, including in-born errors of metabolism where the child’s health deteriorates over time. Children with many of these conditions are likely to die as a result of their disease, and they require significant care as their condition progresses. |
| Cerebral palsy |
This category includes all cases of cerebral palsy, which is a term used to describe a group of non-progressive motor function disorders that arise because of damage to, or dysfunction of, the developing brain. This permanent condition can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It may also cause visual, learning, hearing, speech and intellectual impairments, as well as epilepsy. |
| Epilepsy |
Using the guidelines developed to identify disability, this category only included cases where the frequency and severity of the child’s epilepsy adversely affected their daily activities for a period of six months or more, or the child with epilepsy had associated disability. Epilepsy is a common disorder that is characterised by recurring seizures or sudden, uncontrolled surges in the normal electrical activity in all, or part of, the brain. While the Epilepsy Centre notes that epilepsy can mostly be controlled by taking medication and restricting daily living activities, epilepsy can be associated with sudden unexpected death. |
| Heart and circulatory problems |
This category included all cases where a condition involving the heart or blood vessels was able to be identified, regardless of whether the condition resulted from an infection or from a birth defect. Children with conditions such as complex congenital heart defects or myocardiopathy are, without life-saving surgery such as a heart transplant, at higher risk of dying as a result of their heart or circulatory problems. |
| Intellectual disability |
This category included all cases where the available information suggested that the child had some form of intellectual disability. It was identified as a specific category because it is a developmental disorder, and people living with such disorders have significantly more difficulty than others in integrating new learning, understanding concepts and solving problems. |
| Autism spectrum disorder |
Autism Spectrum Disorder is a lifelong developmental disability that affects, among other things, the way a child relates to his or her environment, and their interactions with other people. Where information was available indicating a diagnosis of ASD had been made, the child was placed in this category. |
| Other types of disability |
This category accommodated all of the remaining disability types in children on the Disability Register. It incorporated cases where a child had conditions such as Epstein-Barr virus, systemic lupus, and community acquired pneumonia. It also included cases where the available information was too limited to confidently assign the case to a specified category. |
| Cancer and ‘disabling medical conditions’ |
The Disability team considered that the issues arising from these deaths were primarily about the medical management of these conditions rather than about issues arising from the disability caused by their impact on the child. These deaths will be reported as deaths from illness or disease. |
Infants with disability
There is a unique set of challenges associated with identifying disability in infants. A set of criteria has been developed by the Committee to identify the deaths of infants with a disability. Deaths are excluded from consideration if the underlying cause is: prematurity alone; prematurity and maternal factors; infection; haemorrhage; digestive or respiratory problems; cancer; heart disease, including myocarditis and cardiomyopathy; or, congenital malformations of major organs such as heart, kidney and liver.
Once these cases are excluded, the remaining deaths are then reviewed by the Disability Special Interest Group, and a decision made about inclusion in the Disability Register based on the available information. Multiple types of disability are not recorded for infants under one year of age.
3.2.5. Contact with the child protection system
To be included in this section of the report, the child, young person, or a member of their family must have had some form of contact with DCP or its predecessors within three years of the incident resulting in their death. The guardianship status of a child, young person, or their parent(s) is determined during this process, whether in South Australia or in another Australian state or territory.
3.3. Coding death using ICD-10
All deaths registered by the Committee are coded according to the International Classification of Diseases, Version 10 (2016) developed by the World Health Organization. This system is accepted as the world standard diagnostic classification system for all general mortality and morbidity classifications20.
3.4. In-depth review process
Deaths screened by the Committee are assigned one of the following criteria:
- Eligible for review – a case will only be considered eligible for review under Section 37(2) of the Act, if the incident resulting in the death or serious injury occurred in the state; or the child or young person was, at the time of their death or serious injury, ordinarily resident in the state.
- Not for review – a case may not require in-depth review if the screening of information available at the time indicated that there are no systemic issues arising from the death. These cases are assigned a category of death, eg, illness or disease, SUDI, transport, deliberate acts etc, and the details are kept on the Committee’s database. They are included in the relevant annual report. They may be included in reviews in later years, where features from cases aggregated over a number of years suggest that there may be systemic issues that can be addressed.
- Pending further information – in some cases the Committee requests further information before making a decision regarding in-depth review.
- Pending completion of investigations – in accordance with Section 37(4) of the Act, the Committee must not undertake a review if there is a risk that the review would compromise an ongoing criminal investigation, and must wait until coronial investigations are complete.
- Awaiting assignment – in any reporting year, there are also cases ready for review but awaiting assignment to a ‘review team’. The number of cases pending investigation or review gradually decreases during any year as information is obtained, cases are finalised in the criminal and coronial systems, and the Committee makes a determination about further review.
3.5. Reporting requirements
Section 39 of the Act outlines the reporting responsibilities of the Committee. It requires the Committee to report periodically to the Minister for Education, and also to provide an annual report on the performance of its statutory functions for the preceding financial year. The Committee submits a report to the Minister for Education at the conclusion of each in-depth review. The report contains the Committee’s recommendations about systemic or legislative issues that may contribute to the prevention of similar deaths or serious injuries.