Platform for adolescents & young adults with cancer
Youngsters or young adults with cancer (AYA stands for Adolescent and Young Adult with cancer) often face the problem of being too old for the children’s ward while the care of adults has no answers to the questions they have. For example: questions about education, work, independence, form relationships, fertility, sexuality and questions about the technical medical part of your treatment.
How can we support AYAs with the questions they have and provide them with better personalised healthcare?
In hospitals affiliated with the National AYA platform is special care designed for young people with cancer. Specific care that is based depending on what they need. The platform is a close cooperation between AYAs and healthcare professionals from the eight university medical centers in the Netherlands and some smaller hospitals. All the knowledge and skills is gathered in co-partnership on the platform to implement AYA care throughout the Netherlands.
What is AYA care?
You can get different ways of AYA care at any time from diagnosis. AYA care is an integral part of the entire treatment process / pathway. More and more hospitals of the National Platform AYA spaces are equipped for AYA where patients between treatments or outpatient visits by can relax with their families. They can then easily come into contact with other peers who go through the same thing.
The AYA platform is also available online. The platform offers a website with information that is available for everyone about important topics for AYAs such as education, sexuality and death. AYAs can also access the community online, here they can get in touch with other AYAs without the interference of healthcare professionals. The AYAs specifically asked for a community where they could talk to each other, since they are the only ones that truly understand their problems and needs.
What did we do?
REshape’s Chief Listening Officer had multiple conversations with the AYAs, the Radboudumc Center for Oncology (RUCO) then started the development of the AYA platform based on her findings. REshape also helped RUCO to create the website and developed an online community using the HereIsMyData platform.
About 2.500 young people (18 – 35 years) get diagnosed with cancer each year. It is precisely at that age you need special care and support.
Dr Eveliene Manten-HorstKwartiermaker nationaal AYA 'Jong & Kanker' Platform
“Leven en dood, een lach en een traan, licht en donker; en daar met elkaar doorheen trekken met luisteren en aandacht, met kennis en kunde: dat is hoe wij samen de zorg voor AYA’s kunnen verbeteren. Niet alles is maakbaar, maar alles kan wel draagbaar blijven zolang we durven luisteren.”
“In tegenstelling tot andere fora hebben de meesten hier op Aya4 humor en kunnen relativeren. Dat vind ik fijn. Ik voel mij er veilig en krijg (h)erkenning en begrip ”