A new Alberta Health Services (AHS) website is helping pediatric patients with chronic conditions prepare for their transition into the adult health care system.
“Pediatric care has its own distinct culture and ways of doing things, so transitioning into the adult health care system can be challenging for young patients and their families,” says Deborah Thul, facilitator of the Well on Your Way-Youth in Transition Program at Alberta Children’s Hospital.
“Life can be overwhelming for young adults because of all the changes and decisions they normally face when growing up: getting a job, continuing their education, moving out. Those with a chronic health condition have the added challenge of managing their medical condition, which means setting up their own appointments, finding a family doctor, understanding medical insurance, keeping track of health information and making their own health care decisions. The transition can be stressful for parents, too, as they may no longer be actively managing their child’s health care.”
Launched earlier this year, the website – fcrc.albertahealthservices.ca/transition – is aimed at patients ages 12 and up who have a chronic condition, such as diabetes, arthritis, muscular dystrophy, heart or kidney disease, cystic fibrosis, epilepsy or multiple sclerosis, which will require ongoing health care throughout their adult life.
The website’s content, developed by the hospital’s neuroscience and Well on Your Way transition staff, gives young patients tips on taking charge of their own health care, outlines the differences between pediatric and adult care, and highlights support networks and resources available in the community.
“The earlier children learn how to manage their chronic conditions and take responsibility for some of their own health care needs, the better off they’ll be when they enter adulthood and start taking those first steps toward independence,” says Thul.
“Young patients can struggle in the adult world and feel abandoned by the pediatric system if they’re not prepared. This website offers them a one-stop location to access information needed to navigate the adult health care system.”
About 500 pediatric patients with chronic conditions transfer from Alberta Children’s Hospital to the adult system every year.
Sharing information and best practices to help Albertans manage chronic diseases is among the short-term actions outlined in the 5-year Health Action Plan, developed by the Government of Alberta and AHS, and supported by the province’s stable, 5-year funding.
The website has already helped many local families, including Dirk and Fabiola Hauck, whose two children, Jarad, 14, and Alysa, 11, have chronic conditions that require regular appointments and checkups at Alberta Children’s Hospital.
“The website empowers children and teaches them how they can keep control of their own health,” Fabiola says. “It helps children make a plan for their life so they can do the things they want to do, even though they have a chronic condition.”
The Haucks have seen examples of this with their own children. Inspired by the ‘take charge’ messages on the website, Dirk and Fabiola decided to involve Jarad in making the decision about a new medication for his rheumatoid arthritis, which leaves his joints inflamed and sore to the point he can hardly move.
“It’s the best decision I’ve ever made,” says Jarad, who has resumed playing school sports since starting his medication.
Similarly inspired, Alysa needs fewer reminders to take her daily pills, as she starts to take more responsibility for managing the medication for her autoimmune disease.
“The website is really helpful,” Alysa says. “I feel more confident to take care of myself, and mom and dad feel more comfortable with me going on sleepovers now.”
Adds Mom: “I’d really recommend this website to parents and their children. It has a lot of really good tools and tips that will help.”
The website is a part of the Supporting Family Centred Care through Technology Project, which is a project sponsored by the Alberta Children’s Hospital Foundation.