Perspectives of mothers on the quality of life of children with epidermolysis bullosa and their parent

Abstract

The aim of the study was to gain insight into some domains of the quality of life of children with epidermolysis bullosa and their parents from perspectives of mothers. Semi-structured interview was used as method for data collection with six mothers of children with epidermolysis bullosa. Thematic analysis was a method of analysing data. The results show that the quality of life of parents of children with epidermolysis bullosa is determined by parents´ good health, job satisfaction and received support from different sources, as well as the family’s financial well-being and their limited possibilities of participating in leisure activities. The quality of life of children with epidermolysis bullosa is determined by the children’s affiliation to the community, poorer health condition of children, children’s abilities to perform certain everyday activities, as well as appropriate support from the formal support system. It is clear that this rare disease affects the quality of life of all family members. Families of children with epidermolysis bullosa need informational, practical, emotional, and financial support from informal and formal support system, especially from highly specialized and well networked professionals.