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Co-researcher training with young people with intellectual disability – An inclusive approach to research

Maridulu Budyari Gumal, the Sydney Partnership for Health, Education, Research and Enterprise (SPHERE) Translational Research Fellowship Scheme (TRFS) recipient, Laurel Mimmo, is working with two young people with intellectual disability to learn about participatory research methods to support her doctoral research. Together Matt, Maya and Laurel are testing out different research methods to decide which methods will best enable children with intellectual disability in hospital to express what is a good experience of hospital care.

Facilitated by Professor Iva Strnadová, from the UNSW School of Education, the co-researcher training was made possible by the 2020 round of the UNSW Disability Innovation Institute’s Research Seed funding Scheme. The purpose of the Scheme is to establish or advance inclusive and interdisciplinary research between UNSW academic researchers, people with disability, government, industry and community. Seed funding was awarded to a project team led by Ms Mimmo’s PhD supervisor, Associate Professor Reema Harrison, from the UNSW School of Population Health. The project team includes experienced interdisciplinary and international researchers from health, education and disability studies.

Aligning with an inclusive research approach Matt and Maya are learning skills such as interviewing by asking questions, using photovoice and body mapping techniques (see photo), analysing data and communicating findings through co-presentations, and life skills such as decision-making and teamwork. Debbie, Matt’s mum, states that, “Whilst Matthew has been involved in the co-researcher training, he has learnt various research skills and developed confidence to express his thoughts and experiences within the hospital system.” Karen, Maya’s mum says, “the insight / lessons we can learn from taking the time to explore the hospital/ healthcare experiences of children with intellectual disabilities will improve not only the safety and quality of care we deliver but also the experience for the 100s of children like Maya and Matt who present to hospitals across NSW every month.”

Matt and Maya are paid for their work and are supported in having time to consider and give their opinions.

Laurel, who was awarded the highly competitive SPHERE research fellowship, is investigating inequalities in the health system for children with intellectual disability and their families. Her project aims to co-design a tool to inform targeted interventions that will improve quality of care for children with intellectual disability, with ensuing benefits for all children who are admitted to hospital.

SPHERE congratulates Laurel on this achievement and we look forward to the translational research outcomes that Matt, Maya and Laurel will deliver as they progress this fantastic and important research forward. We welcome Matt and Maya to the SPHERE research community and are proud of their remarkable research contributions!  

Early/mid-career cancer researchers awarded Cancer Clinical Academic Group seed grants

Maridulu Budyari Gumal (SPHERE) Cancer Clinical Academic Group has committed $100,000 in new seed grants for two interdisciplinary projects led by early/mid-career researchers (EMCRs) to be undertaken in 2021.

Congratulations to the successful awardees and their teams.

New liquid biopsies could provide hope for brain cancer patients

Increasing the efficacy of brain cancer treatment traditionally requires access to tissue samples that can shed light on a tumour’s genetic makeup. But, with many malignancies buried deep inside essential areas of the brain, this tissue is often impossible to reach.

A new research project led by Associate Professor Therese Becker of the Ingham Institute is aiming to solve this problem. Using ‘liquid biopsies’ – that is, blood tests – the researchers hope to reveal critical information about individual patient tumours. 

Implementation Science Webinar

Maridulu Budyari Gumal SPHERE Implementation Science Platform hosted an Implementation Science Webinar on 18th November 2020.