The Quality of Life of Caregivers who Care for a Child with a Rare Disease - Perception of Changes as a Result of Care in the Czech Republic

Kód výsledku v IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F61989592%3A15410%2F14%3A33149156" target="_blank" >RIV/61989592:15410/14:33149156 - isvavai.cz</a>

Výsledek na webu

<a href="http://www.sciencedirect.com/science/article/pii/S1877042814012968" target="_blank" >http://www.sciencedirect.com/science/article/pii/S1877042814012968</a>

DOI - Digital Object Identifier

<a href="http://dx.doi.org/10.1016/j.sbspro.2014.01.1279" target="_blank" >10.1016/j.sbspro.2014.01.1279</a>

Jazyk výsledku

angličtina

Název v původním jazyce

The Quality of Life of Caregivers who Care for a Child with a Rare Disease - Perception of Changes as a Result of Care in the Czech Republic

Popis výsledku v původním jazyce

The so called rare diseases (further RD) are a large heterogenous group of diseases requiring a long-term care. They are very often severe diseases with a very unfavourable even infaust prognosis. In recent years there has been an improvement in the diagnostic and in some cases also therapeutic possibilities. The lifespan of patients is thus extended. The paper describes selected results of an extensive study monitoring the quality of life of caregivers who care for a child with a rare disease. The study presents evaluation of questionnaires from parents of children with the following diseases: cystic fibrosis (CF), spinal muscular atrophy (SMA), mucopolysaccharidosis (MPS), group of metabolic disorders (MP) and achondroplasis (ACH). It was confirmed that most monitored areas deteriorated during the care. Statistically significant differences in the impacts of these factors on personal and social life of respondents from the groups: caregivers who care for a family member with a rare d

Název v anglickém jazyce

The Quality of Life of Caregivers who Care for a Child with a Rare Disease - Perception of Changes as a Result of Care in the Czech Republic

Popis výsledku anglicky

The so called rare diseases (further RD) are a large heterogenous group of diseases requiring a long-term care. They are very often severe diseases with a very unfavourable even infaust prognosis. In recent years there has been an improvement in the diagnostic and in some cases also therapeutic possibilities. The lifespan of patients is thus extended. The paper describes selected results of an extensive study monitoring the quality of life of caregivers who care for a child with a rare disease. The study presents evaluation of questionnaires from parents of children with the following diseases: cystic fibrosis (CF), spinal muscular atrophy (SMA), mucopolysaccharidosis (MPS), group of metabolic disorders (MP) and achondroplasis (ACH). It was confirmed that most monitored areas deteriorated during the care. Statistically significant differences in the impacts of these factors on personal and social life of respondents from the groups: caregivers who care for a family member with a rare d

Druh

D - Stať ve sborníku

CEP obor

AM - Pedagogika a školství

OECD FORD obor

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Projekt

<a href="/cs/project/GA406%2F09%2F0177" target="_blank" >GA406/09/0177: Kvalita života osob pečujících o člena rodiny s těžkým zdravotním postižením</a><br>

Návaznosti

P - Projekt vyzkumu a vyvoje financovany z verejnych zdroju (s odkazem do CEP)

Rok uplatnění

2014

Kód důvěrnosti údajů

S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Název statě ve sborníku

Procedia - Social and Behavioral Sciences

ISBN

—

ISSN

1877-0428

e-ISSN

—

Počet stran výsledku

11

Strana od-do

"1149?1159"

Název nakladatele

Elsevier (NL)

Místo vydání

Amsterdam

Místo konání akce

Antalya, Turkey

Datum konání akce

2. 10. 2013

Typ akce podle státní příslušnosti

WRD - Celosvětová akce

Kód UT WoS článku

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