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Alternative title:

Children's rare diseases – system management from the perspective of the patient's family

Subject and Keywords:

rare diseases   management of health care and security system   socio-economic condition of the family

Abstract:

The author of the article discusses the problem of managing the system of care for a patient with a rare disease in Poland. Systemic solutions in this matter (or lack thereof) determine the socio-economic condition of a family affected by orphanage disease, most often a child. It is not only health care solutions that are at issue here, although they are a priority. A rare disease affects a number of order areas of the patients' life - his or her education, development opportunities, participation in social life. It also has an impact on the life of his family, which in the economic context is starting to generate much more costs, while at the same time increasing restrictions in the sphere of professional activity. The aim of the study is to identify the main needs of patients'; environments in selected aspects of life with rare disease, the satisfaction of which would improve the patient's quality of life and socio-economic condition of his family because the family "suffers" with the disease. The article will use mixed research methods from the group of methods of theoretical research with elements of empirical research (secondary research). Conclusions from the research will be divided into several areas, each of which is important for the condition of a family living in the shadow of a rare disease

Place of publishing:

Wrocław

Publisher:

E-Wydawnictwo. Prawnicza i Ekonomiczna Biblioteka Cyfrowa. Wydział Prawa, Administracji i Ekonomii Uniwersytetu Wrocławskiego

Contributor:

Nowak, Wioletta. Red.   Szalonka, Katarzyna. Red.   Waniowski, Paweł. Rec.   Niemczyk, Agata. Rec.

Date issued:

2019

Detailed Type:

e-book

Identifier:

ISBN 978-83-66066-83-0 (druk)   ISBN 978-83-66066-84-7 (online)

DOI:

10.34616/23.19.125

Language:

pol

Relation:

(Prace Naukowe Wydziału Prawa, Administracji i Ekonomii Uniwersytetu Wrocławskiego)   (E-Monografie ; nr 153)

Is part of:

Zdrowie i style ┼╝ycia

Access rights:

The use of this material is allowed only with accordance of applicable rules of fair use or other exceptions provided by law, and any broader use requires the permission of the authorized entity

License:

Making materials available on the basis of the agreement with the owner of the property copyrights

Rights holder:

Copyright by Wydział Prawa, Administracji i Ekonomii Uniwersytetu Wrocławskiego

Autor opisu:

WR U/PAdjm