Online program helping youth cope with illness pivots during pandemic

·5 min read

SHEET HARBOUR – An online program helping youth cope with illness or grief has continued undisrupted during the COVID-19 pandemic – although some of their clients’ needs have changed. Krista Naugler of Sheet Harbour, national program manager for Upopolis, says they had an advantage when the pandemic hit because it already existed virtually.

“Upopolis is a secure online patient community for youth ages 10-18 years of age living with a critical or chronic illness,” explains Naugler. “It is a platform that gives youth a safe place to connect with peers with similar experiences and medical information has been developed for youth. I accepted my first contract with the Upopolis team just over five years ago and I have been able to work from my home in Sheet Harbour the entire time. I do attend annual strategic planning meeting and conferences with required a bit of travel but the majority of the work can be done from my sunroom.”

Upopolis – founded by the Kids' Health Links Foundation – offers programming by a team of certified child life specialists – educated and clinically trained in the developmental impact illness and injury have on youth. The role of the specialist is to help improve the patient’s care and overall experience.

“This means youth have access to child life services on an ongoing basis – not just during hospital admissions or clinic appointments. In March 2020, our team launched two pop-up groups within Upopolis to support the siblings of youth who have a critical or chronic illness and for youth who are navigating grief due to the death of a loved one,” Naugler says.

At the start of the pandemic, the team was worried about how these youth were coping. “We quickly pivoted to create a program that all youth were invited to participate in,” explains Naugler. “This was something we share on our social channels and as a tool to support front line workers who were trying to provide online programming or connections for their patients. Since we opened it to all youth – we sent the daily lessons and activities directly to their email.”

Due to the repercussions of the pandemic, Upopolis has seen an increase in health care professionals reaching out for more information and to make referrals. “Our team also worked to create content to support parents. For example, we created a podcast to help them prepare their children for receiving the vaccine,” she explains.

Youth must be referred to Upopolis by a health care professional at one of the partner hospitals or organizations. Professionals who work with youth can also submit an individual request to be approved to make referrals. “This is a safety feature to help us ensure that those accessing Upopolis are actual youth,” Naugler says.

As the pandemic progressed, partners’ practices were impacted as restrictions were enforced. That initially meant referral numbers were impacted. “Our team pivoted by offering opportunities for our professionals and referrers to connect and share experiences and resources. We also set up additional educational opportunities and self-care workshops for them,” Naugler notes.

“In addition, we dedicated more time creating and sharing content all families and youth could access which was delivered via our blog, social channels and podcast. Luckily our program has always been online which worked in our favor, with no learning curve for us.”

Through programming and sharing reliable content, the team helps youth learn about their diagnosis, upcoming procedures, positive coping skills and more. “Our team also creates programming that encourage the youth to build relationships and to learn from one another by sharing skills and experiences with one another.”

With restrictions being imposed by the pandemic, additional programming has been developed to help these youth cope with changes. “The team also had to be creative in ways to engage youth and continually reassessing their needs as we noticed, very quickly, they were getting fatigued from the high demand of virtual events – school and all social connections,” says Naugler.

“In the early days of COVID-19 restrictions, our team created a five-day online program for youth called U Got This! The program had five theme days – one looking at the mind versus the brain; one to help youth check-in with their feelings; a day to review positive coping strategies; time to review their daily schedules and how to find ways to do things in new ways; and goal setting,” says Naugler.

The Upopolis team is three contracted child life specialists which includes Naugler, Jessica Miller and Tija Praulins. “The main part of my role is outreach and education for our referrers and partners. In addition, I collaborate with Jessica, the program coordinator, to create content, monitor, set up users and develop programming for Upopolis.”

The team is always looking for new ways to help youth process their experiences and share their expertise to inspire or support other youth and professionals. “For example,” Naugler explains, “… we are currently working with the youth to create a video on taking medication. In the past we created a video on positive coping skills. Tija's role is to develop and grow our sibling community and to create content for our social channels.”

One of the pros of developing an online relationship, Naugler says, is that youth have access 24/7 from wherever they are, so the location of their home or being in hospital does not prevent them from accessing the support and programming Upopolis offers.

A con could mean youth join without knowing anyone. “We know youth like to connect with those they know or have things in common with, so we create opportunities to help them make that connection,” Naugler says. “We have groups which connect them with other youth with their specific diagnosis from the same hospital. We offer online events with fun themes – like games night – hosted by our team to help them establish relationships.”

Youth who would benefit from access or involvement with Upopolis can ask a member of their health care team to refer them or reach out to for assistance.

Janice Christie, Local Journalism Initiative Reporter, Guysborough Journal