Humanising the Impact of Systems on Families Through Storytelling

The experience of parents navigating siloed systems is fraught, with Kiind’s CEO Carrie Clark describing such systems as “multiple, complex and hostile”. Yet, change seems impossible. As little research had previously been done on the impact on families’ lives, our challenge was to foreground these tortuous yet resilient family journeys, and offer directions for change. In a moving political and funding environment (e.g., Disability Royal Commission, NDIS Review), keeping families’ voices central felt all the more integral. As such, this project focuses on carers’ perspectives, and works as a springboard for future dialogue with systems stakeholders.

This project’s success lay in both its thoughtful design research process and its outputs. The final product was an exhibition for decision-makers (including the WA Minister for Disability Services) and families, showcasing key findings and families’ stories, to advocate for systems change. Our research process was carefully designed with families at the centre, and included: - Codesigning bespoke interview tools (journey map canvases) and facilitating 20 interviews to collaboratively draw families’ journeys as they navigated systems. - Designing an immersive walkthrough, featuring families’ ‘raw’ journey maps and the synthesised journey map, ‘Max’s story’. - Producing detailed reports and journey maps to share insights.

By humanising the impact of systems on families through storytelling, the project helped build empathy and understanding. The walkthrough was eye-opening for decision-makers and families, with the ‘raw’ maps described as a powerful advocacy tool for systems change. This process also empowered families - many reported “feeling heard for the first time”. Since then, some parents have joined Kiind’s Systemic Advocacy Group. Kiind are also regularly invited at conferences to showcase the maps, raising awareness among communities and practitioners. The project has guided Kiind’s advocacy and strategy, with the production of high-fidelity outputs also opening doors to system decision making.

To meaningfully elevate families’ voices, our team invested in designing a suite of tailored research tools and outputs: - We created two-metre-long family journey maps to document stories live during interviews. Designed and tested with carers, each map included three ‘swim lanes’ to simultaneously capture the child’s story, the family’s interactions with support systems (e.g., school, NDIS, hospitals), and the resulting impact on the carer’s life. - Empathy interviews (2 hours long) were facilitated by a pair - an interviewer and a scribe - to ensure carers received full attention. The scribe recorded key information on ‘moment’ cards, placing them on the two-metre-long family journey map in real time for carers to review and validate. - The journey map canvases were purposefully designed to be visually engaging and suitable for later display at the walkthrough. After completing interviews and identifying key themes, we revisited the maps, using coloured circles and system-specific stickers (e.g., NDIS, education, health) to highlight challenges and pivotal moments. - To convey collective insights, we developed a synthesised journey map (‘Max’s story’). Centred on a persona - ‘Max’ - this visual narrative, illustrated by a professional comics artist, captured common challenges faced by families and pointed to systemic opportunities for change.