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May 2024
Data linkage is helping researchers understand the lifelong impact of child abuse and neglect, and how they entrench intergenerational disadvantage.
Every year, 1 in 20 Australian children will be reported to child protection. One in 50 children will be the subject of an investigation by authorities and 1 in 100 will have that report substantiated. Almost 1 in 100 will live in out-of-home care. Across childhood, from infancy to age 18 years, the children involved with the child protection system are many times higher. For many of these children, their early experiences will have a devastating impact on their health and wellbeing for the rest of their lives.
“It is not that mothers want to be doing this—mums (and dads) want to do the best for the children. It’s just that the damage associated with their own child abuse history, left untreated (few get the intensive therapeutic services they need), leaves them struggling to parent well.”
Professor Leonie Segal, chair of health economics and social policy at the University of South Australia, has spent more than a decade using linked data to study vulnerable children and their families. She says child abuse and neglect have a huge impact on health and social outcomes, from infancy through adolescence and into adulthood.
“The outcomes are absolutely shocking for children with substantiation who have entered out-of-home care,” Professor Segal says. “Although some do better.”
A lifetime of impact
Professor Segal and her colleagues have used linked data to study more than 620,000 people born in South Australia between 1986 and 2017.
Known as the iCAN project, the research combined information on births, deaths, hospital admissions, emergency department visits, school attendance, child protection involvement, perinatal information and Centrelink payments. The findings, published in top international journals, paint a shocking picture of the mental and physical health impacts of being abused or neglected as a child.
Professor Segal’s research found children who came to the attention of child protection services were three times as likely to die before they turned 16 than those who did not. And if surviving to age 16 years, they were more than twice as likely to die in early adulthood , (before 34 years of age) with particularly high death rates from self-harm and substance abuse, but also from natural causes.
Children known to child protection were less likely to be developmentally ready to start school and more likely to experience chronic truancy in both primary and secondary school. They were also much more likely to end up in the emergency department (ED) or be admitted to hospital, particularly as teenagers and young adults, with many times the risk of an ED presentation for mental health, drug or alcohol-related issues.
The research found these additional hospital visits alone cost the South Australian public hospital system more than $120 million a year (for persons from infancy to 33 years of age).
Intergenerational transmission
Professor Segal said the research also showed how child abuse and neglect entrench intergenerational disadvantage. It found females who were placed in out-of-home care following substantiated abuse or neglect were 26 times as likely to have their own children placed out-of-home care than females who never had come to the attention of child protection. That is after adjusting for factors like socio-economic status.
“These highlight the extraordinary role of intergenerational transmission in creating the next generation of maltreated children” Professor Segal says. “It is not that mothers want to be doing this—mums (and dads) want to do the best for the children. It’s just that the damage associated with their own child abuse history, left untreated (few get the intensive therapeutic services they need), leaves them struggling to parent well.”
Professor Segal says child abuse and neglect is deeply intertwined with mental health, with adversity and harms compounding across a lifetime and generations.
Unreliable memory
Professor Segal says there is no way the research could have been done without data linkage. She says linked data is a relatively low-cost and efficient way of gathering high-quality information, with several advantages over traditional surveys.
For one, it allows researchers to study a wide range of outcomes from infancy, and capturing information on maltreatment from infancy, a time when people simply can’t remember. Furthermore, those exposed to the most serious abuse, who die early, experience brain damage, become homeless, involved with the justice system, or experience major mental health or substance use issues, will be absent from or under-represented in surveys.
Professor Segal says linked data also lets researchers conduct long-term studies without having to wait for people to grow older, and look at intergenerational impacts.
“Because we can look at a population level, we can get large numbers and explore rare outcomes, such as premature death in childhood or adolescence” she says. “Only though data linkage can we determine, at the population level, the number of persons in contact with child protection services from infancy through to age 18 years and how that has changed over the decades.”
Informing policy
Professor Segal says with evidence, we can change life trajectories. She argues we don’t need more case finding (we know who these vulnerable infants, children and young people are) or service co-ordination.
Instead, Professor Segal says we urgently need more intensive services to support troubled families, delivered though our maternal and child health programs, early childhood education and care sector, intensive family support and parenting programs, prisons and a range of community settings.
She says we should be intervening with intensive, well-resourced therapeutic services based in trauma theory, combined with social supports, given the range of adversities families experiencing intergenerational abuse typically face.
“These are very, very troubled families and children,” Professor Segal says. “We need a highly skilful workforce, which we don’t yet have, that understands trauma and how to address complexity.”
Professor Segal says we also need services that are accessible, friendly and compassionate. “We have very shame-based families who, for good reasons, are very nervous of services,” she says. “We need to make services welcoming and capable and where trusting relationships can be developed. Ultimately without extra resourcing to therapeutically address childhood trauma nothing will change.”
More information
Watch PHRN webinar with Professor Leonie Segal.
Privacy and security
Privacy protection and data security lie at the heart of the Population Health Research Network. The collection, use and disclosure of personal information by government agencies and other agencies are bound by strict legislative and regulatory conditions. Researchers wishing to access linked data must also adhere to stringent conditions, including ethics approval, data custodian approval and the development of a detailed data security plan.
Researchers are typically given access to a linked data set put together to meet the specific needs of their project. This de-identified data includes only the minimum information required for the research, such as age rather than date of birth. Government agencies handle personal information in highly secure environments. Data is delivered to researchers through a secure remote access facility, ensuring no information is stored on the researcher’s personal computer or their institutional network.
Researchers cannot export raw data from this system, only their analyses, and these are checked. Researchers must only use the data for the approved purpose and are not allowed to link any other information. At the conclusion of the project, all data must be destroyed or returned. Penalties for researchers and government employees can include criminal conviction, jail time or substantial fines. In the more than ten years since the network began, there has never been a breach.
