Over half of all Australian adults have low health literacy, which can impact decision making about children in their care. By improving levels of community health literacy, this project will help keep children and young people well and prevent them from needing hospital care.
The Royal Children’s Hospital (RCH) Health Literacy Project will address this issue by elevating the voice of the child and combining two successful health communication initiatives (the RCH National Child Health Poll [RCH Poll] and RCH Kids Health Info [KHI]) through directly engaging with children and young people, as well as parents and carers.
Dr Anthea Rhodes
Through understanding children and young people’s perspectives, this project aims to increase community health literacy, helping to keep them well, and out of hospital. The project will develop and launch youth-focused health information to live on the RCH website, including fact sheets and other digital resources, and establish a youth-focused social media channel.
“The RCH Health Literacy Project is all about sharing our expertise and knowledge with the broader community in an accessible and practical way – to empower children, young people and their parents to make informed decisions about their health and wellbeing.”
Clinician Anthea Rhodes, Paediatrician, Director RCH Poll
As young people are increasingly consuming health information via online platforms and social media, this project aims to combat misinformation in a space where influencers lead content creation at a rate of 24:1 when compared to reputable sources.
“This project enables the RCH to play a role in the lives of children and families across Victoria and beyond, not just those who we care for directly in the hospital. The support of the Good Friday Appeal will enable us to lead the way in advocacy and improved health literacy across the community and empower young people to take a more active role in their own healthcare.”, said Dr Anthea Rhodes.
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Type 1 Diabetes Immunotherapy Program at MCRI/RCH
Type 1 diabetes is diagnosed in two to three children per week at The Royal Children’s Hospital (RCH) and is currently incurable. However, thanks to the support of the Good Friday Appeal, a science and research program conducted by the Murdoch Children’s Research Institute (MCRI) and the RCH is offering new hope.
Now in its fourth year, the program which also works closely with the Australasian Type 1 Diabetes Immunotherapy Collaborative, is investigating immune-based therapies to both prevent and treat type 1 diabetes in existing patients. This important trial aims to improve developmental outcomes, quality of life and mental health outcomes while reducing suffering and mortality rates.
Type 1 diabetes is one of the largest disease groups within the hospital. It is also currently incurable. Despite current therapies, it predisposes affected individuals to adverse kidney, nerve, eye, heart and brain outcomes and is also associated with a high mental health burden for patients and their parents.
The RCH and Murdoch Children’s Research Institute (MCRI) are working together to develop the Type 1 Diabetes Immunology Program, in a collaborative effort with the Australasian Type 1 Diabetes Immunotherapy Collaborative.
This program will involve a specialist research centre, designed to understand and treat type 1 diabetes.
It will leverage immune-based therapies and recent breakthroughs in the field, to implement new therapies that come from the area of stem cells, immunology or a combination of both. The program has the potential to radically change the outcomes of children and adolescents with the type 1 diabetes. It can reduce morbidity and mortality rates and improve quality of life and mental health outcomes as well as developmental outcomes.
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Creating evidence for telehealth-delivered neurodevelopmental assessments
Thanks to the Good Friday Appeal, The Royal Children’s Hospital (RCH) and the Murdoch Children’s Research Institute (MCRI) are coming together to undertake research to provide clinicians with guidance and evidence-based information on how to best deliver telehealth developmental assessments.
Patients accessing healthcare via telehealth appointments have increased following the COVID-19 pandemic.
It is vital children and young people with complex neurodevelopmental needs are given accurate and timely diagnoses and appropriate plans to manage their symptoms. This funding will ensure the quality and accuracy of assessments, so patients receive the best possible care.
For most children, the gift of learning, communicating with others, developing friendships, and engaging in day-to-day activities comes naturally. Yet for many children with a developmental disability, this is not the case.
Effective diagnosis and treatment plans for developmental disabilities traditionally rely on a series of in-person assessments that look at social and communication skills, speech and language abilities, and behaviour and brain function. Clinicians have shifted parts of these assessments to telehealth to treat vulnerable or disadvantaged patients.
Currently, the reliability of telehealth developmental assessments is not known. This makes a study in the area crucial in preventing incorrect diagnoses, unsafe clinical practices, and substandard clinical outcomes.
The Royal Children’s Hospital (RCH) and the Murdoch Children’s Research Institute (MCRI) are working together to develop evidence-based telehealth assessments.
The study will provide clinicians with guidance and guidelines on how to deliver high-quality telehealth assessments. This will result in positive health outcomes across the fields of neuropsychology, clinical psychology, developmental paediatrics and speech pathology.
The outcome of this study will be published in journals, discussed at national and international conferences, and shared in workshops to allow clinicians globally to deliver greater care and provide best practices.
This research can lead to high-quality telehealth-delivered assessments. It can also increase access to accurate assessments for vulnerable patients, such as those with immune deficiency, reduced mobility, mental health and neurodevelopmental problems, and those in regional or rural areas.
In 2024, the project team focused on the groundwork. This includes ongoing consultations with RCH staff to ensure the success of the project, creating recruitment and workflow protocols, obtaining preliminary data and establishing assessment protocols.
As of January 2025, the team’s protocols have been fully optimised, and recruitment has commenced—setting the stage for an active and productive year ahead.
“Thanks to the Good Friday Appeal, we will be able to create a new level and higher standard of care for neurodevelopmental assessments delivered via telehealth. This has the potential to remove barriers and ensure more accurate and timely diagnoses and clinical results, helping change children and young people’s lives.”
Associate Professor Jonathan Payne, Principal Research Fellow at the Murdoch Children’s Research Institute
Impact Milestones
2024
Actively collaborated with RCH clinical leads to align the study protocols with the needs and demands of clinical practice. This is important so the methods the team are aiming to validate will be feasible for RCH clinicians to put into everyday practice.
Results of the consultation have guided detailed assessment protocols and the procedural manual for the study so that telehealth assessments will be readily implementable into daily clinical practice.
Recruitment strategies and workflows have been created.
Preliminary data from all study arms have been obtained and are proving very valuable:
In the neuropsychology arm, the methods we are using for telehealth assessment of learning challenges and intellectual ability appear to be produce accurate results and have been acceptable to clinicians and families.
In the autism arm, preliminary assessments revealed that our adapted telehealth procedure, based on current best practices, required a minor modification to gather additional information from the child. This adjustment ensures the assessment process is more comprehensive and clinically meaningful.
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Chronic Illness Peer Support (ChIPS) Program
The ChIPS story doesn’t just encapsulate the program’s growth and longevity; it also shows the difference it has made in the lives of young people with chronic illnesses.
ChIPS was born out of a vision to provide a support system for young people who were navigating the complex and often isolating world of chronic illness.
“Thirty years ago, the idea of ChIPS came about because it was witnessed on the wards. The young people with chronic illness, who were regular patients of the hospital, were building friendships,” Harry Lengelsen-Brown, Program Manager of ChIPS shared.
“Over the thirty years, the core of the program has been asking young people what they want. So, everything that has changed and developed has happened organically because we’ve always asked young people what they wanted.”
Thanks to the Good Friday Appeal, ChIPS provides a supportive community for those navigating the complex world of chronic illness. It offers young people the opportunity to connect with each other through organised activities and twice yearly camps. There are currently 135 young people registered with ChIPS and up to 700 young people have participated in the program since 1993.
One of the most significant milestones in the ChIPS program took place in the early 2000s when the idea to organise the first ChIPS camp emerged.
“Some of the ChIPERS said they wanted to have a camp because they wouldn’t normally get to go on school camps. The staff were a bit taken aback at the time, so they said, ‘If you can raise $5,000, you can have a camp,’ and I’m told they chose a number that they thought could never be raised.”
“But it was – they went out with the support of their families and fundraised $5,000 and went back to the staff and said, ‘When are we going on camp?’ There’s been an annual camp ever since then,” Harry recalled.
“When the RCH Foundation said they were going to support the program, it changed the whole mindset of how we went about things. Knowing we could keep growing and implementing things was great,” said Harry.
“With the support of the RCH Foundation, we’ve been able to look at our calendar year and say we can run all of these events. I had a conversation with a young person, and he was never able to perform in a school musical, but he loves the performing arts.
“So, he wanted to run a musical production and we’re able to say ‘Yes, let’s do it!’ Without that funding and support, we wouldn’t have been able to say yes.”
Harry Lengelsen-Brown, Program Manager of ChIPS
“When people from other hospitals across the world hear about the ChIPS program, they say, ‘How have you managed to do that?’”, Harry shared when reflecting on the ChIPS program’s incredible journey.
“The program is such a simple idea when you think about it: here’s a bunch of young people supporting each other, let’s put them into a program and see what happens. I wish the supporters of the program could meet some of the young people and hear from them and their families what this has meant for them because it’s genuinely life-changing.”
The longevity of ChIPS is not just measured in numbers but in the countless stories of resilience, hope and transformation.
“A particular story that stands out to me is a young person who said she wouldn’t be here if it wasn’t for ChIPS. When she first joined the program, she was in a very dark place. And now, she’s finished her degree and is just killing it,” Harry shared.
As the ChIPS program continues to go from strength to strength, its future is full of possibilities.
“Thirty years ago, they said, ‘Let’s listen to the young people and what they want, and we’ll do what we can to make that happen!’. And that’s still what we’re doing now, so as long as we remember that we can’t go wrong,” said Harry.
I want to say a massive thank you to all our supporters, including the Good Friday Appeal! It’s hard to capture in words what ChIPS means to the young people who have been in the program.”
Harry Lengelsen-Brown, Program Manager of ChIPS.
Impact Milestones
2020
In response to the COVID-19 Pandemic, the team successfully adapted and delivered core programs in a hybrid format.
Ensured patient engagement through a blend of virtual and face-to-face activities.
2021
Continued virtual operations to ensure safety, facing and overcoming the challenges posed by the pandemic.
2022
Continued virtual operations in the first half of the year.
June 2022 – Slow reintroduction of face-to-face events.
November 2022 – Presented at the Australian Association for Child and Adolescent Health (ACAH) conference.
2023
Successfully achieved intake goals, engaged new referrals, and maintained a hybrid model for program activities.
Staff participated in relevant professional development meetings and supervision sessions.
Advocated for peers across the RCH hospital departments and participated in community events.
Released an annual magazine and conducted leadership training for Peer Leaders.
Organised and facilitated various social events, including the successful January 2023 camp post-COVID restrictions.
Engaged in community events such as the Melbourne Pride March.
2024
Completed filming of a short film project that was entered into the Focus on Ability Film Festival.
36 young people, 16 volunteers and medical staff attended yet another successful January Camp. 29 ChIPERS also attended the program’s September camp.
After the impact at ACAH, ChIPERS were invited to present their guidelines to 20 allied halth staff at the RCH. This workshop is the first of its kind and will be an ongoing component of allied health professional development.
Young people were invited to present and run workshops throughout the year at forums such as the Health Education Learning and Parents (HELP) in Adelaide and the Australian Association of Adolescent Health conference in Brisbane.
The peer leadership team, which consists of more experienced program participants, received extra training. This included a Racism 101 Leadership Training, which saw five peer leaders in attendance.
The socials subcommittee organised bi-monthly games night and four social events.
The publications subcommittee released their latest version of their magazine.
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Upgrade of Retcam
Each day some of Victoria’s sickest babies and infants are admitted to the Butterfly Ward at the RCH, the Newborn Intensive Care Unit (NICU), with many teams from across the hospital coming together to provide specialist care. One of the teams caring for these babies is the Ophthalmology Department.
Through Good Friday Appeal support, RCH Ophthalmologists will have access to the latest equipment and technology, with the upgrade of a vital tool used in screening for eye disease in newborns, known as a RETCAM.
Using the RETCAM, clinicians are able to take digital photos of structures inside the eye to screen for paediatric eye conditions. The device will also play a pivotal role in how a patient’s evolving eye disease is managed. For example, for children with retinoblastoma, an eye cancer that develops in the retina, the RETCAM can be indispensable in detecting changes in the retina which can progress from sight-affecting to life threatening. The current system has been in use at the RCH since 2002 with almost 6,000 babies already directly benefiting from this sight-saving technology.
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New Electrosurgical Units
On average, over 13,000 surgeries are undertaken at the RCH every year. Thanks to support from the Good Friday Appeal and 3AW, clinicians across the hospital will have access to the latest equipment through the upgrade of 19 electrosurgical units.
Used in almost every surgery, and across multiple departments, the electrosurgical unit uses a high-frequency electrical current to cauterise blood vessels during surgery. The new devices will contain the latest technology available and will ensure safer, quicker, and more precise surgeries.
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Cardiology Research
Thanks to support from the Good Friday Appeal, researchers at the Murdoch Children’s Research Institute (MCRI) are helping to ensure a brighter future for children with cardiac conditions.
Associate Professor Jonathan Mynard is a bioengineer and cardiovascular researcher at the MCRI, specialising in paediatric hypertension, medical devices, cardiovascular modelling, blood pressure and flow dynamics (haemodynamics), and congenital heart disease. Jonathan’s current research project is looking at the difference in blood pressure measurements between a child’s arms, and the impact this may have on a child’s diagnosis. It is the first study worldwide to determine the size and frequency of inter-arm blood pressure differences in children and adolescents.
Initial findings revealed that even a small difference in blood pressure measurements between one arm and the other could lead to a wrong diagnosis. “Children with high blood pressure, many of whom appear to be healthy, have a greater risk of developing hypertension in adulthood, a major risk factor for cardiovascular disease,” said Jonathan.
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Garden Program Vision: A Breath of Fresh Air
The Royal Children’s Hospital (RCH) Therapeutic Garden Program delivers dedicated programs for patients and families at three specialised garden spaces at the hospital.
The Kelpie Garden Space – accessible to children and adolescents with acute and chronic health issues.
The Therapy Garden South – accessible to RCH staff, and both inpatients and outpatients accompanied by staff.
The North Court Garden Space – accessible to patients, visitors and RCH staff.
The programs include a combination of individual and group horticulture activities and creative experiences designed to distract from pain, decrease stress and provide relief. The gardens also offer a quiet, calming environment for patients, families and staff, providing an alternative space to the hospital wards.
The RCH Therapeutic Garden Program is funded by philanthropy, including support from Woolworths through the Good Friday Appeal. Drawing on extensive research demonstrating the physical, mental and social benefits of providing patients with access to garden spaces, the RCH is extending the program, resources and accessibility of its gardens to reach more patients across the hospital. On average, approximately 60 patients per month benefit from the program. This extension is made possible with thanks to the generous funding support this program receives.
This educational and therapeutic initiative is led by a multidisciplinary team including child life therapists, garden staff, and volunteers and aims to decrease stress for patients and their families, which helps to improve patient recovery. Beth Dun, Manager, Child Life Therapy at the RCH said that garden programs have great benefits for patients and families.
“The Garden Program will be incredibly beneficial for patients at the RCH. As well as giving them a place to breathe in fresh air, it can also be a welcoming space for children and young people from regional areas, who often find the city very intimidating,” said Beth.
Studies show that 95% of people who walk through hospital gardens report a therapeutic benefit. When hospitals provide easy access to nature, patients experience a reduction in stress, blood pressure and pain, while also experiencing an increase in pain tolerance, and faster recovery times. The social element of garden therapy allows users to feel empowered and more engaged.
Contact with nature helps hospital staff and family members more effectively deal with the stress of providing care, which enables them to better serve those they are caring for. Gardening provides a range of mental health benefits, including significant reductions in depression and anxiety, and improved social functioning.
“Gardening itself has many benefits for patients, including offering a safe, natural setting to participate in a non-clinical, fun activity that provides a welcome distraction from their illnesses. The use of familiar garden tasks that are simple and diverse offers patients the chance to feel successful as well as tasks that cater to different levels of capacity or energy.”
Impact Milestones
July 2023
Employed a Therapeutic Garden Program Coordinator and a new full-time Therapeutic Garden program staff member. These staff members are developing the workplan to deliver the new vision, including increasing wheelchair accessibility, increasing shaded garden spots to create calm spaces for therapies, and increasing the number of patients who can access the program and garden spaces.
Commenced diversifying the plant species to provide sensory experiences for all patients – providing colour, touch, smell and feel.
Undertaken consultation with clinicians and treatment teams to tailor the garden spaces to meet the therapeutic goals of a diverse range of patient needs.
Received volunteer support from corporate teams and the RCH volunteer program.
November 2024
The program has provided and hosted sessions for patients across five different wards: cardiac, oncology, rehabilitation and two for eating disorder patients.
Patient referrals have been received from a further five wards: Cockatoo, Kelpie, Sugar Glider, Koala and rehabilitation outpatients.
Mindfulness and wellbeing sessions for staff have been run in conjunction with key events like wellness weeks.
Ongoing maintenance and upkeep of the three therapeutic garden spaces.
Installation and commencement of the Kitchen Garden Project which has meant food may be picked by patients and herbs are picked by the hospital’s food services.
Commenced a research project in conjunction with the Allied Health Research team on transforming allied health with nature, resulting in a presentation at an Allied Health symposium.
Continuation of diversifying the plant species to provide sensory experiences for all patients – providing colour, touch, smell and feel.
Strengthened partnerships with clinical teams to encourage outdoor clinical sessions.
Continued receiving volunteer support from corporate teams and the RCH volunteer program.
