The Main Problems of Parents of a Child With Epidermolysis Bullosa

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 wa...

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Bibliographic Details
Published in:Qualitative health research 2008-04, Vol.18 (4), p.545-556
Main Authors: van Scheppingen, Corinne, Lettinga, Ant T., Duipmans, José C., Maathuis, Karel G. B., Jonkman, Marcel F.
Format: Article
Language:English
Subjects:
Adolescent
Caregivers - psychology
Child
Child, Preschool
Children
Chronic diseases
Chronic pain
Disabled Children - psychology
Employment
Epidermolysis bullosa
Epidermolysis Bullosa - physiopathology
Epidermolysis Bullosa - psychology
Family conflict
Family Health
Family problems
Female
Gravity
Health Knowledge, Attitudes, Practice
Health technology assessment
Humans
Ignorance
Leisure
Male
Medical personnel
Parent-Child Relations
Parenting
Parents & parenting
Parents - psychology
Qualitative research
Resistance
Severity
Suffering
Uncertainty
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Summary: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.
ISSN:1049-7323
1552-7557
DOI:10.1177/1049732308315110