Our research, Families in Focus, leveraged seed funding from the LCC’s Knowledge Transfer Innovation Award (awarded to the first author, 2023) and addresses the limited evidence embedding voices of children with disabilities and their families, despite growing policy needs. We report on our 5-phase participatory framework wherein we collaborated with consumers to co-design creative engagement methods – art, craft, games, poetry, short films, journaling, and 3-D installations – to amplify their educational, health, and social support experiences and priorities.
Success of the framework: Families in Focus successfully engaged 51 families, representing diverse ages of child and parent, disability type, geographic location, and socioeconomic background, and embedding lived experiences through interactive activities and post-activity engagement. Using a 5-phase framework (Draft, Develop, Deliver, Discuss, Present), we collaborated with consumers to authentically share perspectives, amplifying consumer voice.
Key research findings: Families of children with disability face noisy hospitals, long waits, financial burdens from healthcare and travel, and limited NDIS access. Stigma and poor cultural sensitivity delay diagnoses and isolate families. They need better hospital play spaces, quieter areas, tailored education, safe friendships, and coordinated care to support wellbeing, especially for rare diseases and or those in rural areas.
Families in Focus facilitated bi-directional knowledge sharing, by presenting existing research on health, education, and social systems with participants and capturing their lived experience and priorities. We mapped key findings across wellbeing domains of ARACY’s The Nest and presented these to government, health, and community stakeholders, including state health agencies, who embedded findings into strategic plan. Our findings allow for future research to build upon this framework and embrace more true co-design strategies.