Informed consent in research is crucial for meeting ethical standards, transparency, and voluntary participation. However, current institutional research consent processes often rely on text-heavy documents filled with complex academic jargon. This approach can lead to misunderstandings and disengagement, posing a significant challenge to obtaining genuinely informed consent. This study outlines the process of developing visual tools to improve the informed consent process in sleep health research with First Nations peoples.
Through a collaborative process engaging First Nations visual communication experts and First Nations community researchers, visual consent tools were redesigned to prioritise participant engagement. Iterative feedback was provided regarding accessibility, cultural responsiveness, and suitability for First Nations communities, whilst balancing consumer-centric information and the rigour of the informed consent process. Subsequently, the Lets Yarn About Sleep First Nations Data Governance team assessed the work for cultural responsiveness and suitability for First Nations sleep health research. The final stage involved obtaining institutional ethics committee approval for consumers to test and evaluate the visual tools.
Initial feedback from community researchers and the Data Governance team highlights the potential of the visual consent tools to enhance the informed consent process. Further testing and evaluation will confirm the impact of these tools on participant comprehension and engagement.
This study documented initial steps in First Nations-led development of culturally responsive visual tools for seeking informed consent in sleep health research. Future work must evaluate broader acceptability of culturally grounded visual consent approaches, with a view to reforming institutional research ethics processes.