Impact of Painful Wound Care in Epidermolysis Bullosa During Childhood: An Interview Study with Adult Patients and Parents
Petra Mauritz, Marcel F. Jonkman, Sanne S. Visser, Catrin Finkenauer, José C. Duipmans, Mariët Hagedoorn
Preview of fully accepted paper, still not published in any volume
Epidermolysis bullosa (EB) is a group of rare inherited bullous skin disorders that differ in nature and severity. Currently, there is no cure for the disease. One of the complex problems of EB is the repetitive and painful care of skin wounds. The purpose of this study was to explore how adult patients and parents experienced the impact of wound care during childhood and which coping strategies they considered as helping. A qualitative study was performed, comprising semi-structured in-depth interviews with 7 adult patients and 6 parents. The impact, physically, psychologically and on daily life, was apparent for patients and parents. Helpful coping strategies were transferring care, regulating emotions, and dyadic strategies, such as supporting each other by distraction, encouragement, using rituals and collaboration. The most important finding of this study is the need for a more thorough investigation into the effectiveness of dyadic coping strategies.
Wound care in children with epidermolysis bullosa is physically and psychologically stressful for both for children and parents. This study aimed to gain an in-depth understanding of how adult patients and parents of adult patients experienced the impact of wound care during childhood and which coping strategies they considered as helping. For children, wound care was associated mainly with pain, itching, and anxiety, while for parents, regulating emotions, such as sadness and powerlessness, was a major issue. Dyadic coping strategies, such as supporting each other by distraction, encouragement, using rituals and collaboration, were reported to be helpful to both children and their parents. Parents and children should learn which coping strategies are helpful for themselves and for each other in the context of wound care.