Atopic Dermatitis Management Difficulties for Parents and Caregivers

Julie Block: The impact on quality of life for children differs from adults. They’re forming their persons in many ways, and the issues are different. Let’s say you have a high school child who is wondering about going to college. They’re wondering about managing their disease while they’re at college or any profession, leaving home. Is there a bathtub in the facility where I’m going to be living? Many children are very concerned about relationships. Will anybody ever love me? Will anybody ever touch me? Will they see beyond my skin? And those are very difficult and challenging issues to navigate. When your skin is flared, even when it isn’t, the trauma of the experience throughout a child’s life of dealing with this chronic disease has deep psychological roots and impact.

Many children are very ashamed and embarrassed and very concerned for the impact that it has on their family, the attention their parents have to give them, the expense, the numbers of doctors’ appointments that they have to go to. And that creates a very big cycle of embarrassment, and shame, and isolation. For parents, the impact is gigantic as well. First, in infancy, if an infant isn’t sleeping, nobody sleeps, and that continues on through childhood. So we do know that the impact on caregivers and sleep deprivation impacts their work, their presenteeism, their absenteeism in their job and in their life, many times their career choices. Many times a parent decides to home school because there is no option for that child, and they become a one-wage-earner family.

Beyond that, the impact on the marriage and the relationship is very strained because you have to understand that one of the most maddening things about atopic dermatitis is you’re always looking for what triggered it. Is it the tomatoes? Is it the dandelions? I’m sure it’s the milk, and people drive themselves absolutely crazy trying to figure that out. And then there can be a little blame game about, well, what did you feed her, or parents need to get on the same page about the treatment. And it’s very laborsome. You’re with a small child. You’re doing skincare, which can take up to 2 hours a day. So I think that’s a pretty good illustration of the impact on a family, including the child and the parents. And I need to add the siblings. Sometimes there’s a great amount of resentment that builds because one child is getting more attention than the other. There’s also impact on where they may be able to go on vacation. If that child can’t go to the beach, then the family doesn’t go to the beach. Again, this has impact on the entire family.

The management of comorbidities for people with atopic dermatitis is a complex subject. I think multidisciplinary care for patients with atopic dermatitis is a gap and an area that we need to address. We also need to empower the patient and the caregivers to manage their health system, so that they can get the care that they need and deserve. It is a critical element of managing atopic dermatitis, and you need a team. You need a whole team. That team may include a pediatrician, an allergist, a dermatologist, a psychologist, a nutritionist, and interventions at the school level with the counselor and the school teacher. So it does take a team to surround a child with atopic dermatitis with what they need and deserve.