Patients' and parents' experiences during wound care of epidermolysis bullosa from a dyadic perspective: a survey study

Petra J. Mauritz; Marieke Bolling; Jose C. Duipmans; Mariet Hagedoorn

doi:10.1186/s13023-022-02462-y

Patients' and parents' experiences during wound care of epidermolysis bullosa from a dyadic perspective: a survey study

Petra J. Mauritz^*, Marieke Bolling, Jose C. Duipmans, Mariet Hagedoorn

^*Corresponding author voor dit werk

Health Psychology Research

Onderzoeksoutput › Academic › peer review

4 Citaten (Scopus)

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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

Originele taal-2	English
Artikelnummer	313
Aantal pagina's	9
Tijdschrift	Orphanet journal of rare diseases
Volume	17
Nummer van het tijdschrift	1
DOI's	https://doi.org/10.1186/s13023-022-02462-y
Status	Published - 13-aug.-2022

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10.1186/s13023-022-02462-yLicentie: CC BY

Patients’ and parents’ experiences during wound care of epidermolysis bullosa from a dyadic perspectiveFinal publisher's version, 764 KBLicentie: CC BY

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title = "Patients' and parents' experiences during wound care of epidermolysis bullosa from a dyadic perspective: a survey study",

abstract = "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",

keywords = "Wound care, Pain, Anxiety, Parent-child dyad, Epidermolysis bullosa, QUALITY-OF-LIFE, MAIN PROBLEMS, CHILDREN",

author = "Mauritz, {Petra J.} and Marieke Bolling and Duipmans, {Jose C.} and Mariet Hagedoorn",

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T2 - a survey study

AU - Mauritz, Petra J.

AU - Bolling, Marieke

AU - Duipmans, Jose C.

AU - Hagedoorn, Mariet

PY - 2022/8/13

Y1 - 2022/8/13

N2 - 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

AB - 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

KW - Wound care

KW - Pain

KW - Anxiety

KW - Parent-child dyad

KW - Epidermolysis bullosa

KW - QUALITY-OF-LIFE

KW - MAIN PROBLEMS

KW - CHILDREN

U2 - 10.1186/s13023-022-02462-y

DO - 10.1186/s13023-022-02462-y

M3 - Article

SN - 1750-1172

VL - 17

JO - Orphanet journal of rare diseases

JF - Orphanet journal of rare diseases

IS - 1

M1 - 313

ER -

Patients' and parents' experiences during wound care of epidermolysis bullosa from a dyadic perspective: a survey study

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