In addition to the effects on the child, childhood AD can affect the emotional, financial, physical, and social well-being of parents.31,32
Mothers of young children with AD report poor social support, decreased employment outside the home, stress about parenting, and difficulty with discipline.12
In addition, increased AD disease severity is strongly associated with a greater effect on the family, which decreases as disease severity lessens, highlighting the importance of understanding and measuring the burden of disease on the entire family.33–36
The effect on the family is increased when parents perceive high disease severity, worry about payment for medical care, and seek nonmedical or over-the-counter products therapy.32
It is not uncommon for parents of a child with AD to change their lifestyle and home environment dramatically to help cope with the needs of their atopic child. These changes may be financially burdensome and stressful and include changes in their homes (flooring, heating, and air-conditioning systems), vacations, and activities. In addition, parents complain of exhaustion and fatigue, likely as a result of sleep deprivation.
Parent sleep deprivation can be notable, and the mean sleep loss was quantified in one study as 1.9 hours and 1.5 hours for the severe and moderate disease groups, respectively.37
Another study noted 39 minutes of sleep loss for mothers and 45 minutes of loss for fathers, and severity of sleep disturbance was correlated with maternal anxiety and depression.38
Parents of children with AD have many worries, including triggers for disease flares (ie, diet and environment), the cause of disease, costs of care, proper use of medications, and long-term outcomes for their child’s health, well-being, and self-esteem.2
In addition, parents commonly worry about and fear the use and side effects of topical corticosteroids. In a questionnaire-based study, 72.5% participants worried about using topical steroids on their own or their child’s skin. This worry led to noncompliance in 24% of individuals.39
In the International Study of Life with Atopic Eczema (ISOLATE), patients and caregivers reported delaying use of topical steroids for approximately 1 week after onset of a flare.40
This study highlights parental response to fear of medication use, with suboptimal adherence, undertreatment of disease, and the desire to seek alternative therapies, some of which may be unproven, unbeneficial, or harmful.
Parents also report significant emotional effects, including sadness, crying, guilt, and self-blame, as a result of having a child with AD. They may blame themselves because they had or have atopic disease, or they may blame their atopic spouse for their child’s illness. Parents often feel responsible for exposing their children to food or environmental allergens that they believe cause or worsen the dermatitis. In addition, negative reactions of friends, relatives, and the public can be emotionally stressful for parents and often evoke feelings of anger, sadness, helplessness, embarrassment, frustration, and disappointment. Moreover, parents report accusations of child abuse or neglect from strangers and the offering of unsolicited advice as a common occurrence. To avoid such conflict, parents of children with AD may stay home more to avoid these negative interactions and thus may develop feeling of social isolation.2