Portal de Periódicos da CAPES

The Main Problems of Parents of a Child With Epidermolysis Bullosa

2008; SAGE Publishing; Volume: 18; Issue: 4 Linguagem: Inglês

10.1177/1049732308315110

1552-7557

Corinne van Scheppingen, Ant T. Lettinga, José C. Duipmans, Karel G.B. Maathuis, Marcel F. Jonkman,

melanin and skin pigmentation

Epidermolysis Bullosa (EB) is a rare genetic blistering-skin disorder with varying degrees of severity, ranging from mild forms to severe forms, with chronic progression. The aim of this study was to identify and specify the problems of parents of a child with EB. Qualitative research methodology was used, comprising a series of semistructured interviews with eleven families. The key problems of parents were broken down into three themes, related to the child, the family, and the care providers. These themes comprised nine categories, including (1) the child being different, (2) the child suffering pain, (3) feelings of uncertainty, (4) restrictions on employment and leisure time, (5) difficulties in organization of care, (6) never being off-duty, (7) family problems, (8) ignorance and lack of skills of care providers, and (9) resistance to difficult care. Despite the great variance in clinical pictures of the different (sub)types of EB, the main problems parents experienced appear quite similar. However, the problems did appear to differ in extensiveness, intensity, and gravity.