Insights From Caregivers on the Impact of Pediatric Atopic Dermatitis on Families: “I’m Tired, Overwhelmed, and Feel Like I’m Failing as a Mother”
Korey Capozza, H. Wippell Gadd, Keri Kelley, Shannon Russell, Vivian Y. Shi, Alan Schwartz
Abstract
BACKGROUND: The impact of pediatric atopic dermatitis (AD) on families is largely hidden from view, and AD is commonly misunderstood as a minor skin condition. Few studies have examined the full burden of AD from the family perspective. OBJECTIVE: The aim of the study was to assess the burden of AD on children and families using a caregiver-centered survey. METHODS: A 72-item anonymous online survey was posted on social media sites targeted to or composed of parents of children with AD. It explored the following 9 domains of impact: sleep, social isolation, time requirements, life decisions, family relationship dynamics, energy/fatigue, mental health impacts, and unmet treatment needs. Atopic dermatitis severity was reported by respondents using the Patient-Oriented Eczema Measure. Statistical analyses were conducted using R 3.6.0. RESULTS: Two hundred thirty-five individuals completed the survey during the 1-month period that it was promoted via social media. Caregivers reported frequent sleep disturbance, exhaustion, worry, and social isolation related to their child's AD. CONCLUSIONS: Results highlight the need for psychosocial support and respite care for caregivers of children with AD.