Background
Lived experience is personal knowledge gathered through first-hand experience of situations or events.1,2. The Western Australian Youth Cancer Service (WA YCS) collaborated with Matthew, a young consumer advocate diagnosed with synovial sarcoma soon after his 18th birthday, to create an educational resource featuring his lived experience of cancer and the widespread disruption it caused to his achievement of developmental milestones.
Methodology
As treatment options faded, Matt collaborated with health professionals in the WA YCS to make video recordings; sharing his personal experience to educate and inspire health professionals to consider the inherent difficulties of navigating cancer as a young adult and calibrate their care accordingly. These videos have been presented to health professionals in a variety of educational forums.
Results
The result of this collaboration between consumer advocate and health professionals is truly profound; a powerful, moving video recording detailing Matt’s lived experience of cancer and its treatment on his physical, emotional, social and cognitive capacity. Matt openly describes experiencing helplessness, isolation and a loss of purpose coupled with feelings of gratitude at marrying the love of his life and spending his honeymoon in hospital. Anecdotal feedback from staff engaging with the videos has been overwhelmingly positive, with health professionals reporting having a greater understanding of the issues affecting young people with cancer and expressing a desire to reflect on their own practise.
Conclusion
Matt ultimately lost his life to synovial sarcoma soon after his 25th birthday. This video series lives on as a powerful tool to educate and inspire health professionals to consider the unique needs of young people with cancer, calibrate their provision of care and ultimately improve the cancer experience for other young people.
RIP Matthew.