Genetic conditions are the leading cause of death in children in high-income countries. Accurate and timely diagnosis is critical for being able to provide prognostic information and guide treatment, yet often takes many years.
Sophie Deane is a 20-year-old young woman with some pretty big ideas about what she would like to do with her life. She has just finished school and is keen to get on and find a job, move out of home, travel – and maybe even get married. She would like the chance to tell you more about those hopes and dreams.
“Let our families and others who are important to us, be with us to care for us and love us” (Charter on The Rights of Children and Young People in Healthcare Service in Australia, 2017).
Patient and family-centred care has been widely accepted as an ideal way to care for children in hospitals. This was not always the case. Drawing on the RCH Archives collection, interviews with current and past patients, families and nursing staff, we will explore how family-centred care has evolved over time, to the present era where the child and family are at the forefront of our care.
Too often research evidence fails to inform practice or policy, and opportunities to improve children’s health and wellbeing are lost. The Melbourne Children’s Knowledge Translation and Research Impact Project, funded by the RCH Foundation, seeks to better understand campus KT and impact needs, and has developed and piloted strategies to advance knowledge translation, implementation and research impact.
Medulloblastoma is the most common malignant brain tumour of childhood. Despite multidisciplinary therapies offered by neurosurgery, radiation oncology and paediatric oncology through cooperative group clinical trials, there are significant late effects of therapy, including but not limited to neuroendocrine deficits, neurocognitive impairment and second malignant neoplasms
Hospitalisation for treatment of serious illness can place infants, and their families, at risk with respect to their mental health. Trauma responses are common, and optimal infant-parent relationship development may be disrupted. Significant additional environmental and psychosocial burdens were placed on this group in 2020 as a consequence of measures adopted to protect the community from COVID-19.
Neuroscience Advanced Clinical Imaging Service (NACIS) is the translational clinical and research program embedded in the Neurosurgery Department at The Royal Children’s Hospital (RCH). Although officially established in January 2020, NACIS emerged from work since 2012 which was supported by a Clinical Paediatric Neurosurgery Research Fellowship from the RCH Foundation.
In this interactive and case-based session, the Children’s Bioethics Centre team will introduce the ethical idea of deciding with children, rather than ‘for’ them. We will briefly describe the ethical foundations of this idea, discuss what it means in practice, and why it matters.
A Stepped Care Approach to Developmental Care is a Royal Children’s Hospital Foundation funded project which aims to ensure that children referred with a developmental concern are seen by the right person in the right place at the right time. To achieve this a new Allied Health centralised intake team apply a stepped approach that identifies the child’s needs and pathway.
Ms Jacquie O’Brien, is the CEO of Tweddle Child and Family Health Services, a statewide early parenting intervention and prevention health service and public hospital. Jacquie will be speaking on trauma-informed care and developing integrated models of care with early parenting services. Ms O’Brien will describe, using case studies and experience, how working in an integrated way across health services can lead to better outcomes for all.
