To the average person, eczema may seem like a mild irritation, but to families dealing with eczema, it can be an overwhelming skin condition that affects every aspect of their life. It can also be a sign of bigger things – in young kids, eczema is often linked to asthma and allergies.
As Jo-Anne St-Vincent and Shauna Filuk, nurses and certified asthma and allergy educators with the Children’s Allergy & Asthma Education Centre (CAAEC), were working with their young patients with asthma and food allergies, they saw that many families were also dealing with eczema, but not getting the educational resources or support they needed.
“Eczema really affects quality of life. I wasn’t aware of how much eczema affects many aspects in their life,” says Shauna. “Families are up all night, dealing with children that are scratching and irritable and can’t sleep because of itch and the pain of broken skin.”
Jo-Anne adds that the constant itch can negatively impact attention span and temperament, and scratching can further damage the skin and keep the child in a constant itch-scratch cycle, causing scarring and discolouration.
In addition, some experts believe that young children who develop eczema are developing food allergies through the broken skin.
“It’s a new way of thinking, but if that’s true, managing eczema well may prevent food allergies very early on in life,” says Shauna.
Realizing that eczema was a part of the allergic disease umbrella that was not being addressed in the province, the two nurses applied for funding to begin a program to offer this much-needed support.
With a small grant from the Canadian Allergy and Asthma and Immunology Association (CAAIF), the two nurses did a needs assessment and literature search. With that knowledge in hand, the CAAEC applied for and received a Children’s Hospital Advisory Committee grant from The Children’s Hospital Foundation to develop an education program for families of children under the age of five with moderate to severe atopic dermatitis (eczema).
The funding allows the nurse educators to spend individualized time with families explaining treatment plans and providing support. Parents are able to ask questions, get personalized tips for their child’s skin, and have hands-on support with cream application and techniques. Topics covered include how much medicine and cream to apply, how to use baths and water to hydrate the skin effectively, and which triggers, such as soaps or clothing items to avoid. Although eczema tends to have moments of flare-ups then improvement, Jo-Anne and Shauna have seen a vast improvement overall during follow-up visits.
“We help them to understand the chronic nature of eczema – and it is chronic. We are their partners for a long time because these skin conditions are going to last a long time,” says Shauna. “We’ve heard from families that have said, “We’ve gone to our pediatrician so many times, to dermatologists, and this is the first time someone has sat with us and the creams to really show us how much cream to use.”
“We can’t heal eczema, we can only control it,” adds Jo-Anne.
“Once families understand that daily management is required long term and begin to put the treatment plan into practice, they begin to see improvements. The intensity of the care required to treat eczema is time consuming and can be exhausting. With good understanding and outside support, families seem better able to cope.”
In addition to individualized appointments, Jo-Anne and Shauna have created printed resources that can be used for in-patient and out-patient teaching. Jo-Anne and Shauna also provide assistance on the wards if children are admitted due to their eczema, and hold telehealth seminars to educate medical professionals in remote Manitoba communities.
Families can be referred for education by other health care professionals and physicians. “A lot of doctors or allergists we work with say they just don’t have the time that is needed for families to clearly understand the entire eczema treatment plan. We’ve been thrilled with the support and enthusiasm received by our colleagues in the field of allergy and dermatology. Our experience is that doctors are excited about the opportunity to have someone sit down with their patients and help them,” says Jo-Anne.
Thanks to the grant from the Children’s Hospital Foundation, the CAAEC has been able to devote time to this important matter. While maintaining their regular roles as allergy educators, the funding provided Jo-Anne and Shauna with the support and time needed to work additional hours to increase their eczema knowledge and skills.
Once the eczema education program is fully developed, the goal will be for the CAAEC to absorb the program into its everyday responsibilities. Jo-Anne and Shauna will teach their colleagues so more and more families can receive support.
“Our hope is that all staff at the Children’s Hospital who works with children with eczema becomes very knowledgeable in terms of managing eczema on a daily basis and during acute flare-ups and that they know to refer families to the CAAEC for ongoing support and education,” says Jo-Anne.
The pair is grateful for the funding that has made their impactful work possible, as well as the support from the medical community. Without the thoughtful gifts from donors like you, none of this would have been possible.