Can I read Patients’ and Parents’ Experiences During Wound Care of Epidermolysis Bullosa from a Dyadic Perspective: a Survey Study on EtoBox?

Patients’ and Parents’ Experiences During Wound Care of Epidermolysis Bullosa from a Dyadic Perspective: a Survey Study by Petra J. Mauritz; Marieke Bolling; José C. Duipmans; Mariët Hagedoorn is a Biochemistry, Genetics and Molecular Biology article available to read on EtoBox.

What is Patients’ and Parents’ Experiences During Wound Care of Epidermolysis Bullosa from a Dyadic Perspective: a Survey Study about?

## Background: Epidermolysis bullosa is a rare, often severe, genetic disorder characterized by fragility of the skin and mucous membranes. despite the important role of parents during wound care, an essential factor in adapting to this disease, studies focusing on the parent-child relationship during wound care are scarce. the current study is aimed at addressing this gap. ## Methods: A quantitative study among 31 children (n = 21 ≤ 17 years; n = 10 17-25 years) and 34 parents (including 27 parent-child dyads) was conducted to examine the relationship between pain, itch, anxiety, positive and negative feelings, and coping strategies assessed with the newly developed epidermolysis bullosa wound care list. the majority of the analyses were descriptive and the results were interpreted qualitatively because of the small sample size. ## Results: Children and parents both showed significantly more positive (i.e. 'protected', 'proud', 'calm', 'connected to each other' and 'courageous') than negative feelings (i.e. 'helpless', 'angry', 'insecure', 'guilty', 'gloomy' and 'sad') during wound care, with parents reporting both feelings more than children. the more children experienced pain, t

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Author

Petra J. Mauritz; Marieke Bolling; José C. Duipmans; Mariët Hagedoorn

Published

2022

Language

EN

Field

Biochemistry, Genetics and Molecular Biology (Life Sciences)