Informing patients with progressive neurological disease of their health status, and their adaptation to the disease

Result code in IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F61988987%3A17110%2F19%3AA200226M" target="_blank" >RIV/61988987:17110/19:A200226M - isvavai.cz</a>

Result on the web

<a href="https://bmcneurol.biomedcentral.com/track/pdf/10.1186/s12883-019-1488-y" target="_blank" >https://bmcneurol.biomedcentral.com/track/pdf/10.1186/s12883-019-1488-y</a>

DOI - Digital Object Identifier

<a href="http://dx.doi.org/10.1186/s12883-019-1488-y" target="_blank" >10.1186/s12883-019-1488-y</a>

Result language

angličtina

Original language name

Informing patients with progressive neurological disease of their health status, and their adaptation to the disease

Original language description

Background Progressive neurological diseases, such as multiple sclerosis, Parkinson's disease, Huntington's disease, significantly interfere with patients' lives, and those of their families. The aim of the research was to establish whether the extent of the information on patients' health conditions, and the way patients learn this information from doctors affect their adaptation to chronic and progressive diseases. Methods Qualitative methodology was used for a total of 52 participants (patients with progressive neurological diseases, their family members, and health and social workers). Data were collected using individual, in-depth interviews and focus groups. Analysis of data for interpretation, conceptualization, and re-integration was performed by open, axial, and selective coding. Results It was determined that adequate information about patients' health status, and the use of coping strategies are related to their adaptation to their disease, and consequently, to their quality of life. The participants often considered the extent of the information provided, and the way they were informed to be inadequate. Receiving the diagnosis, the progression of the disease, and the end of life were found to be the most burdensome. Conclusion Our results show that Czech neurologist should develop better communication skills, particularly for informing patients with progressive neurological diseases. Open communication, emotional support, and support in selecting effective coping strategies can help patients adapt more readily to their disease, and improve their quality of life.

Czech name

—

Czech description

—

Type

J_imp - Article in a specialist periodical, which is included in the Web of Science database

CEP classification

—

OECD FORD branch

30210 - Clinical neurology

Project

<a href="/en/project/NV17-29447A" target="_blank" >NV17-29447A: A NEUROPALLIATIVE REHABILITATION APPROACH TO PRESERVE THE QUALITY OF LIFE IN PATIENTS WITH AN ADVANCED STAGE OF SELECTED NEUROLOGICAL DISEASES</a><br>

Continuities

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

Publication year

2019

Confidentiality

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

Name of the periodical

BMC NEUROL

ISSN

1471-2377

e-ISSN

1471-2377

Volume of the periodical

19

Issue of the periodical within the volume

1

Country of publishing house

GB - UNITED KINGDOM

Number of pages

12

Pages from-to

250

UT code for WoS article

000492959900001

EID of the result in the Scopus database

—