[Dressing material in children with epidermolysis bullosa : A qualitative study on experiences of parents and affected children].

BACKGROUND

Epidermolysis bullosa (EB) is a rare genetic disease that soon becomes apparent after a child's birth. Mechanical stress in particular causes painful skin-blistering that potentially leads to numerous complications. Dressing materials fulfill important functions for children with EB: they help protect the skin, but create problems at the same time.

OBJECTIVE

The study focuses on the experiences with dressing materials among parents and affected children. The exploration of individual experiences and the presentation of successful strategies to deal with problems is intended to contribute to a better understanding of the advantages and disadvantages of different dressing materials.

MATERIALS AND METHOD

Following a qualitative research approach, eight semi-structured interviews were conducted with N = 13 persons. For analysis, a structured qualitative content analysis with an inductive/deductive approach for setting up the final categories was chosen.

RESULTS

The use of dressing materials in the context of a dressing change is a key issue for parents and affected children. Five main categories were identified: the child's individuality; problems of use; the adjustment process; parents' expertise; organization of materials. In a continuous process, parents acquire specific knowledge and skills that enable a good fit between the dressing materials and their child and contribute to their own handling confidence.

CONCLUSION

With their action-oriented expertise, parents can avoid additional skin damage caused during dressing changes. Here, the focus is on technical skills that lead to more comfort for the affected child and help parents to meet the challenge of dressing changes. Regarding the child's development, parents are continually confronted with new challenges and must adapt their old, or develop new, strategies.