
Families in Focus: Embedding the voices of children with a disability and their families in research priorities.
By By Dr Laetitia Coles, Queensland Brain Institute, The University of Queensland, 17 November 2023
Drawing upon Australia’s wellbeing framework for children and young people, The Nest, we have been listening to children with disability and their families to understand what families need to thrive.
A wild research idea
Two sociologists (Emma Cooke and Laetitia Coles) and their colleague (Jasneek Chawla) a paediatric respiratory and sleep medicine specialist, walk into a wild research idea… It sounds like the beginning of a joke. Walking into – and promptly clinging onto – a big idea that quickly grew from a small amorphous seed may be, at times, a little funny (in the way that wild ideas sometimes are). But this wild research idea was no joke. At its heart, this wild idea contained the desire to do something exciting and new, and to listen to the stories of children with disability and their families about what they need inside their nests to thrive.
On a sunny day in Brisbane, we found ourselves discussing some of Jasneek’s PhD research findings. Jasneek learned that families caring for a child with a disability have many unmet needs – some simple, some profoundly complex. These needs went well beyond their need for more and better sleep – the original focus of our shared work. And so, a bigger question emerged: How could we, as researchers, and how could Jasneek, as a researcher and clinician, address the needs of these families? And how could we identify potential solutions?
Digging deeper
To answer these questions, we first needed to understand what was already known about children’s and families’ perspectives and experiences. We trawled through some of the most recent research in Australia to identify known barriers, enablers, and opportunities for those caring for a child with disability. We looked for ideas for what appropriate, targeted support might look like.
Our trawl yielded a haul of some answers, but also dredged up more questions: Are there other experiences not yet captured? What about the experiences of family members? What would help the most? And, perhaps most importantly of all, there was a large hole in our knowledge and in the research literature where children’s own perspectives should be – both of those with disability, and their siblings.
We had to talk to children and their families.
The Event
How do we present our findings from our haul of the trawl of research to families – the multiple themes and ideas we identified – in a way that is engaging, thought-provoking, and fun, so that we can get their feedback on what is missing?
With the support of some seed funding from ARC Centre of Excellence for Children and families across the Lifecourse (The Life Course Centre), we planned an Event. An ambitious, two-day interactive research event at the Queensland Children’s Hospital and an online companion event. This event was the first of its kind, and was run in partnership with Child Health Research Centre, Queensland Children’s Hospital, Children’s Health Queensland, and with the support of Children’s Hospital Foundation.
Families in Focus comprised six fun and interactive activities. Both in-person and online, families were invited to read our posters, watch videos of others with lived experience, listen to poetry, create artwork depicting their ideal school or hospital, and talk with us about what social connection means to them, their experiences of sleep, and how to create a brighter educational future for their child.
The Nest: A Framework for Wellbeing in Action
The Nest wellbeing wheel framework was featured in the first of our Activities at the event as a way of showcasing research findings. Using the visualisation of The Nest, we presented existing understandings of the perspectives and experiences of children with disability and their families through a series of posters. Each poster represented one of the six themes of The Nest:
Healthy,
Participating,
Identity & Culture,
Material Basics,
Learning, and
Valued, Loved, & Safe.
We asked families to reflect on the information presented in each poster, and respond to a simple question: What else do you need within your Nest to help your child and your family thrive?
The Power of Listening
As a researcher, receiving the gifts of a participant’s time and their often quite vulnerable stories is always a humbling experience. Over the two days of the in-person event, our team had the unique privilege to listen to the stories told by more than 40 families. Many more families engaged in our ongoing online companion event. Through their generosity, children and their caregivers have told us about the need for better educational supports and the transformative power of strong social and healthcare networks. But we have only just begun – as we take a closer look at the stories, we will uncover much more over the coming weeks.
What’s next?
We’re currently analysing the information we received from families. Our goal is to develop a co-designed Research Priority Statement that identifies the needs of children and families, informed by children and families themselves. The domains of The Nest will play a vital role in shaping this priority statement.
We’ll be sharing our findings with key stakeholders in an upcoming Town Hall event. To find out more, please contact Dr Laetitia Coles or head to our website.
Want to get involved?
If you, or any one you know, might like to be involved, please head to our website for more information.
Watch the webinar:
Presented by Associate Professor Jasneek Chawla and Dr Laetitia Coles, this webinar shared the methodology for Families in Focus, the experiences of those who participated, and presented the key findings from this innovative event.