Understanding the experiences and research priorities of children with disability and their families in hospital setting in Australia: A novel multi-modal participatory research framework

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First published online 01 June 2025.

Why this study was done

Families of children with disability are often left out of research that shapes health and education services. Usual research methods can make it hard for them to take part or share their real experiences. The Families in Focus project aimed to create and test new, creative ways for families to share their stories and ideas.

What the study did

Researchers worked with 51 families through a five-step process that included co-design, creative activities, and reflection. Families joined a two-day event at a hospital and used an online platform to take part in art, games, and journaling activities about their experiences with healthcare, education, and support systems.

What the study found

Families talked about challenges such as poor care coordination, long wait times, financial stress, stigma, and difficulties accessing inclusive education and the NDIS. They also shared ideas for improvement, like quieter hospital spaces, clearer communication, and more joined-up care. Taking part in the project helped families feel connected and heard.

What this means

Creative, participatory approaches can help families of children with disability share their experiences in meaningful ways. This model shows how co-designed research can inform better policies and services, and it is already being used to guide family-centred planning in Queensland Health.

This study was conducted by:

Dr Laetitia Coles, Professor Karen Thorpe & Dr. Jasneek Chawla

To read the full article, visit the journal.

For other accessible formats, please see the column to the right.

Disclaimer: The QDRN has utilised generative AI to refine the wording of this plain language summary. All content has been checked for accuracy, appropriate tone, and clarity and approved by the author.

First published online 01 June 2025.

Why this study was done

Families of children with disability are often left out of research that shapes health and education services. Usual research methods can make it hard for them to take part or share their real experiences. The Families in Focus project aimed to create and test new, creative ways for families to share their stories and ideas.

What the study did

Researchers worked with 51 families through a five-step process that included co-design, creative activities, and reflection. Families joined a two-day event at a hospital and used an online platform to take part in art, games, and journaling activities about their experiences with healthcare, education, and support systems.

What the study found

Families talked about challenges such as poor care coordination, long wait times, financial stress, stigma, and difficulties accessing inclusive education and the NDIS. They also shared ideas for improvement, like quieter hospital spaces, clearer communication, and more joined-up care. Taking part in the project helped families feel connected and heard.

What this means

Creative, participatory approaches can help families of children with disability share their experiences in meaningful ways. This model shows how co-designed research can inform better policies and services, and it is already being used to guide family-centred planning in Queensland Health.

This study was conducted by:

Dr Laetitia Coles, Professor Karen Thorpe & Dr. Jasneek Chawla

To read the full article, visit the journal.

For other accessible formats, please see the column to the right.

Disclaimer: The QDRN has utilised generative AI to refine the wording of this plain language summary. All content has been checked for accuracy, appropriate tone, and clarity and approved by the author.