Only two of Australia’s 11 dedicated children’s intensive care units provide formal follow-up support for families after the sudden death of a child, according to a new study led by Curtin University.
Researchers found families who lose a child in intensive care can be left without consistent support once they leave hospital, with most units relying on doctors, nurses and other clinicians to provide bereavement care alongside their usual jobs.
The national survey revealed just two of the 11 dedicated paediatric intensive care units (PICUs) in Australia had a formal bereavement follow-up service, while three provided no follow-up service at all.
Of the eight units that provided some form of follow-up, most relied on informal support from clinicians rather than a structured evidence-informed service from dedicated bereavement staff.
Lead researcher and Curtin University PhD candidate Arielle Jolly, who also works at The Child and Adolescent Health Service, said the death of a child was devastating for families, who could need support well beyond their time in hospital.
“When a child dies, their family is left to cope with an intense and life-changing grief,” Mrs Jolly said.
“Most children who pass away are cared for at the end of life in an intensive care unit, where doctors, nurses and allied health clinicians provide complex care.
“While families receive important support in hospital, our research shows there are gaps once they return home.
“Bereavement care is happening, but in many cases it depends on staff fitting it around their other responsibilities or providing support in their own time.”
The research found all 11 intensive care units provided memory-making activities and end-of-life photography, while 10 involved siblings in the care of their dying brother or sister.
However, ongoing support after leaving the PICU was less consistent.
Of the eight units that provided some form of follow-up, all offered families a phone call and five offered a return visit to the hospital to meet with their treating team.
Only one unit reported having paid, dedicated time for staff to deliver bereavement care.
Professor Fenella Gill from Curtin’s School of Nursing said families needed greater continuity of care after the sudden death of a child.
“PICU nurses and other clinicians often form very close relationships with families during some of the most difficult moments of their lives,” Professor Gill said.
“When a child dies, those relationships do not necessarily end when the family leaves the hospital.
“Providing structured follow-up can help families feel supported while also giving clinicians clearer guidance about how to provide the best bereavement care.”
Dr Jason Sharbanee from Curtin’s enAble Institute and the School of Population Health said more consistent approaches were needed to ensure families were not dependent on individual clinicians providing ongoing support.
“Families should not have to rely on whether an individual clinician has the time or capacity to stay in touch,” Dr Sharbanee said.
“We need to better understand what families need after they leave hospital and ensure intensive care units have the funding, staffing and training to provide this support.”
This study highlights existing gaps in PICU bereavement care, with the researchers conducting an innovative research program to develop and test an Australian-first, evidence-informed bereavement service, designed with bereaved families.
The FOOTPRINTS Project bereavement service is currently offered as part of a clinical trial to families bereaved in the PICU at Perth Children’s Hospital, who are not already supported by another team such as palliative care.
The trial is soon to be expanded nationally to PICUs in four other children’s hospitals in Victoria and New South Wales.
The study, ‘Bereavement Care Practices: A National Survey of Australian Paediatric Intensive Care Units’, surveyed clinicians from all 11 dedicated paediatric intensive care units in Australia between November 2024 and April 2025, providing the first comprehensive national picture of bereavement care in Australian PICUs.
This study, part of the Footprints Project was funded by Telethon Trust, Perth Children’s Hospital Foundation, Future Health Research and Innovation Fund, and the Stan Perron Charitable Foundation.
