Psychosocial Enabling Platform
The Psychosocial Enabling Platform supports precision medicine studies, with an equity focus on priority populations, ensuring all patients and families' needs are met.
To ensure that all children and young people benefit from precision medicine, it is necessary to extend research beyond the laboratory to address the psychosocial risks of precision medicine and ensure its equitable rollout.
Applying a psychosocial lens to paediatric precision medicine ensures that the psychological, social and educational wellbeing of patients, their siblings, and their caregivers is not left behind with rapid advances in ‘omics’ technology and treatment-focused clinical research.
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The Psychosocial Enabling Platform offers psychosocial research expertise and support to precision medicine studies to ensure that the needs of all patients, their siblings and their families are met.
We have an equity focus on priority populations including Aboriginal and Torres Strait Islander children, children from Culturally and Linguistically Diverse communities, children with lived experience of disability, children from rural and regional areas and/or those affected by socioeconomic disadvantage.
We aim to provide psychosocial resources for families, support education and schooling for children having paediatric precision medicine and their siblings and enhance mental health in children and families accessing paediatric precision medicine. -
The platform includes the following services.
- A Consumer Board and Consumer Engagement Framework
- Specialist psychosocial equity research expertise
- Specialist statistical advice
- Grants support/advice
- Clinical psychology expertise for risk management
- Indigenous lived experience and expertise
- Connections and collaborations across supported studies
- Cultural capability and translation services from English to Chinese and Arabic
- Advocacy and dissemination of findings across supported studies
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Lead Investigator
- Dr Kate Hetherington, Post-Doctoral Research Fellow/Clinical Psychologist, Paediatrics School of Clinical Medicine, Faculty of Medicine and Health UNSW, Sydney (UNSW); Team Leader Ethics and Genetics Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Sydney Children’s Hospital Network (SCHN).
Research Team
- Professor Claire Wakefield, Professor in the Discipline of Paediatrics, School of Clinical Medicine, at UNSW Sydney and Executive Director of the Behavioural Sciences Unit at Sydney Children’s Hospital
- Professor Sue Woolfenden, Director of Community Paediatrics at Sydney Local Health District and Professor of Community Paediatrics at The University Sydney
- Dr Joanna Fardell, Senior Research Fellow, for Maridulu Budyari Gumal (SPHERE), UNSW Sydney and Deputy Director of The Behavioural Sciences Unit, Kids Cancer Centre at Sydney Children’s Hospital.
- Dr Sarah Ellis, Postdoctoral Research Fellow and Clinical Psychologist with the UNSW Sydney School of Clinical Medicine, and the Kids Cancer Centre at Sydney Children’s Hospital.
- Dr Lauren Kelada, Post-Doctoral Research Fellow within the UNSW Sydney School of Clinical Medicine and the Sydney Children’s Hospital.
Platform Personnel
- Dr Katarina Ostojic, Research Fellow, University of Sydney and Adjunct Associate Lecturer at UNSW Sydney
- Seaneen Wallace, Gunggari and Bundjalung woman, is the Aboriginal Health research assistant with the Psychosocial Enabling Platform.
- Dr Venkatesha is the Research Statistician with the Psychosocial Enabling Platform.
- Kris Pierce (Child Unlimited), Engagement Lead
- Tiana Kittos (Child Unlimited)
- Serena Chiu B. Psy(Hons)
- Sandra Takchi BA. Psy(Hons)
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- UNSW Sydney
- University of Sydney
- Sydney Children’s Hospitals Network (SCHN)
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We are currently seeking expression of interests (EOIs) from eligible paediatric precision medicine researchers and clinician interested in accessing the Luminesce Alliance Psychosocial Platform support services. Read more
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‘Finding a Way’ video resources
These six brief positive psychology talks are designed for parents of children with severe epilepsy that persists over a long time. In one sense they may be of help for any parent who has a seriously ill child. However, they are specially prepared with parents of young children with very serious brain disorders in mind.
The Finding A Way series aims to go a small way to bridge the gap between the language of medical science and the language of our personal experience as parents. The talks reflect different voices, and different stages in the journey shared by families, including the joys and heartache experienced when caring for children with severe epilepsy. No two illnesses are the same and no two families are the same. Nevertheless, we hope you find the simple suggestions throughout the series helpful.
‘Finding a Way’ video resources are being used across the Sydney Children’s Hospitals Network and are currently hosted online on the Paediatric Epilepsy Network New South Wales website.