Data collection to increase the quality of life of people living with EB and their relatives
The aim of the research project entitled "Burdens and helpful aspects for achieving and maintaining quality of life with epidermolysis bullosa" is to get an insight into the living conditions of EB patients, their relatives and caregivers. Helpful factors for achieving and maintaining the quality of life of those affected by EB are collected. Patients themselves as well as their relatives are of course experts in this field. Their experiences and impressions are collected based on qualitative and quantitative research. Participants can use a diverse questionnaire in German and English, sometimes with open answers, to paint a detailed picture of their situation. The evaluation is therefore associated with considerable additional effort. However, it also gives the researchers the opportunity to create complex data, that can directly benefit people who live with EB.
A seven-person research team from the Sigmund Freud University in Vienna is working on this study under the supervision of Ms. MMag. DDr. Gudrun Salamon. The interdisciplinary team consists of researchers from the fields of medicine and psychology.
This research project is about thinking outside the box and giving those affected by EB and their environment a voice. In this way, holistic support can be guaranteed, and relatives, whether taking on a caretaker role or not, are suported. From many years of work with patients, it is known that there are offers and factors that can make life with EB easier.
It is "(...) one of the most interesting projects I have ever been involved in," says senior physician Dr. Anja Diem, Head of the EB outpatient department. "Because the main focus, in contrast to all the other work I know on the subject of" Quality of Life in EB ", is on the supporting factors that are and were helpful for our patients."
In addition to those affected, relatives are also involved in this study. Each person’s needs are different. Their environment, experiences and personality, shapes them. . Based on the study it can be guaranteed that the diversity of the life of individuals can be recorded.
The research project is financed by DEBRA Austria and the Sigmund Freud University in Vienna and carried out in cooperation with DEBRA International.