@Article{Mącik2015,
journal="Dermatology Review/Przegląd Dermatologiczny",
issn="0033-2526",
volume="102",
number="3",
year="2015",
title="The need of social support, life attitudes and life satisfaction among parents of children suffering from epidermolysis bullosa",
abstract=" Introduction.  Epidermolysis bullosa (EB) is a group of rare genetic skin disorders. Much is known about the disease from the medical perspective, but there are still only a few studies about the psychological condition of the patient or his family. The birth of a child with EB may become a trauma for the parents. Parents’ feelings also vary depending on the type of EB.   Objective.    The main aim of the study was to determine whether, and in what way, having a child suffering from EB influences parents’ life and psychological well-being. Due to this aim, life satisfaction, life attitudes and the need for social support were measured.   Material and methods.    Twenty-one parents of ill children were studied (13 mothers, 8 fathers; 16 parents had one child with EB and 5 parents two). Six children suffered from EB simplex, 1 child from junctional EB and 14 from dystrophic EB. The course of the disease was mild in 9 children and severe in 12. As the control group 22 parents of healthy children were chosen.   Results.    The parents of ill children have a greater need for social support from family, both general, and instrumental, appraisal and emotional. The need for support from medical institutions is at a low level. In life attitudes there are also significant differences. Parents of ill children have a higher level of existential vacuum, and a lower level of life control and life purpose. Also the life satisfaction is lower.   Conclusions.    The results of our study indicate that a child suffering from EB is a heavy burden for the parents.",
author="Mącik, Dorota
and Kowalska-Dąbrowska, Monika",
pages="211--220",
doi="10.5114/dr.2015.51922",
url="http://dx.doi.org/10.5114/dr.2015.51922"
}