Background:
Recognition is growing that adolescents and young adults (AYA) have specific and unique needs related to a diagnosis of cancer. They face worse medical outcomes and often experience enduring physical and psychosocial impacts. ONTrac at Peter Mac supports young people with cancer and their families through direct clinical care, education/training, secondary consultation and research. The Victorian and Tasmanian Youth Cancer Advisory Board (YCAB) was established in 2010 with support from the Victorian Department of Health as a mechanism for ensuring meaningful youth consumer engagement in the development of AYA cancer services and initiatives.
Aim:
YCAB operates with the vision of improving the lives of young people affected by cancer and their families.
Method:
The establishment and operation of YCAB is evidence and experience based. Membership comprises a demographically, diagnostically and experientially diverse group of 10-12 young people who have experienced cancer during the AYA years as patients, partners or siblings. Evaluation of each term of the Board is completed annually.
Outcomes:
To date YCAB have achieved systemic national and jurisdictional change in a range of areas, including AYA service models of care; youth friendly hospital infrastructure; health professional education and training; resources for young people and AYA research. In recognition of their work, the Board received the 2011 Victorian Public Healthcare award for responsive governance, and in 2013 were awarded independent funding from the Victorian Department of Health in relation to several key priority areas.
Discussion:
This poster will discuss the importance of AYA consumer engagement, the rationale behind Board development, process of establishment and outcomes to date. It will reflect on international models of youth inclusion and the reasons for success in this venture.