Epidermolysis Bullosa (EB) is a hereditary, incurable skindisease that often affects the quality of life in children and their parents. Due to the nature of the disease, children with EB require intensive care and are dependent on their parents long term. This thesis of Petra Mauritz examines the quality of life in children with EB and their parents from a dyadic perspective.
The results of the studies showed that children with EB and their parents perceived a slightly lower quality of life compared with their healthy peers. Their emotional well-being was closely intertwined and related to several coping strategies of both children and parents. For instance, children who showed more acceptance of their disease also showed higher levels of social and emotional functioning. Pain during wound care was associated with anxiety and negative emotions in both children and parents. More use of distraction and postponing of wound care by both children and parents was associated with increased pain, itch or anxiety. Parents of younger children or parents who were performing more frequent and prolonged wound care, seemed to be more burdened.
This thesis showed that the quality of life of children with EB and parents is influenced by the disease itself but also by the impact of EB and the coping strategies they perceive in each other. Helping children and their parents to work together to manage EB in general or with wound care in particular may not only empower children and benefit the child’s quality of life, but it may also improve the parent’s quality of life.
