Youth Retinoblastoma Support at Upopolis
Upopolis is a secure online social network and education tool, helping young patients and survivors around the world cope with, live through and grow beyond their medical trauma. The community builds connection, comfort and hope, empowering children and youth with chronic illness, and young survivors.
What Is Upopolis?
Upopolis is a place where children aged 10-18 years with significant medical diagnoses can talk with other kids in the same situation. This is a great resource for young retinoblastoma survivors wishing to connect with other children who share their experiences and understand the impact at their specific life stage.
In addition to basic chat functionality, members can maintain a journal, create and share their own blogs, and establish new forums on a particular topic. A mentoring program enables experienced youth aged 19+ to remain in the program, supporting new and younger members of the community.
The site also provides tools to help children and teens understand their diagnosis and medical experience, and its impact on their life, and develop effective coping skills. Carefully curated age-appropriate educational content is provided by health professionals, partner hospitals, and disease-specific organizations.
Child life specialist moderators monitor every post, comment and interaction across the site. They interact daily with members to provide support, identify and help address concerns early. They also plan and facilitate activities and discussions to support learning and healthy coping.
Upopolis was established in Canada, and now partners with hospitals across the USA and around the world. The site is strictly managed and monitored by health care professionals to ensure user safety. All members must be referred by a healthcare professional.
Who Can Access Upopolis?
Upopolis is a private, secure, and monitored social media space for children and youth aged 10-18 years dealing with serious illness, chronic disease, hospitalization, intense therapies and the impacts of their diagnosis. Children as young as 8 can be admitted if the child is involved in certain registered programs.
To ensure user safety, all children and youth must be referred by a healthcare professional to begin the member application process. Every child’s identity is verified during the application process.
Anonymity is not allowed within Upopolis. To increase accountability for their behaviour, users must sign a pledge of responsibility during the application process, and be identified by their real first name when using the site.
The only adults with access to the Upopolis platform are verified healthcare professionals trained to care for and work with young patients.
Is There Specific Retinoblastoma Support?
WE C Hope’s Child Life Director, Morgan Livingstone, works closely with the child life team at Upopolis to onboard children and youth for whom she provides child life services. She has created a Upopolis microsite specifically for young retinoblastoma survivors, where they can connect, support, and learn from one another.
None of the Upopolis child life specialist moderators has specific knowledge of retinoblastoma, or experience caring for diagnosed children and youth. However, Morgan is in close contact with the team, keen to help them foster a supportive community for young survivors in this secure and very supportive arena.
How Can I Register My Child?
To ensure personal safety and security of young members, all membership applications must be completed by a healthcare professional in the child’s medical care team. Your hospital may have a specific partnership with Upopolis, through which they can action the membership – please ask your child life team or social worker about this.
If your child would like to join the community, and your hospital does not have an established partnership, a member of your healthcare teem can still make a referral. They and their institution must first be verified.
Visit the Upopolis section for medical professionals for more information and next steps.
The following video was created for medical professionals who wish to refer children to Upopolis.