Background and Purpose
For over 40 years, Redkite has provided children and families with essential psychosocial support to navigate the profound challenges of childhood cancer. In recognition of the power of co-creation, partnership and inclusion in improving cancer outcomes, a foundation of our work in recent years has been the active involvement of consumers with a lived experience. Through our Redkite Lived Experience Advisory Group (LEAG), we have created a platform for families to influence and shape Redkite’s policies, services, resources and practices; ensuring their voices are central to our work.
Sample and Methods
Since the LEAG’s inception in 2022, more than 20 parents and carers have participated in regular quarterly consultations, providing feedback on various aspects of Redkite’s work, including our research, program design, communication strategies, and the creation of new resources to improve psychosocial outcomes. An evaluation of the LEAG was recently undertaken utilising an online survey and consultations with group members to explore consumer experiences, highlight key benefits, and identify improvement opportunities and lessons learned.
Results
For LEAG participants, membership has fostered a sense of empowerment and fulfilment, allowing them to meaningfully contribute and give back to an organisation that supported them during their cancer journey. For Redkite, it has offered invaluable insights into the emotional journeys and practical needs of families, enabling us to co-design and tailor our services and practices to align with real-world experiences of childhood cancer.
Conclusion and implications
The LEAG demonstrates the mutual benefits of regularly integrating the lived experience into Redkite’s organisational practice, providing a model for others in the sector.