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

Kód výsledku v 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>

Výsledek na webu

<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>

Jazyk výsledku

angličtina

Název v původním jazyce

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

Popis výsledku v původním jazyce

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.

Název v anglickém jazyce

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

Popis výsledku anglicky

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.

Druh

J_imp - Článek v periodiku v databázi Web of Science

CEP obor

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OECD FORD obor

30210 - Clinical neurology

Projekt

<a href="/cs/project/NV17-29447A" target="_blank" >NV17-29447A: NEUROPALIATIVNÍ A REHABILITAČNÍ PŘÍSTUP PRO ZACHOVÁNÍ KVALITY ŽIVOTA PACIENTŮ V POKROČILÉ FÁZI VYBRANÝCH NEUROLOGICKÝCH ONEMOCNĚNÍ</a><br>

Návaznosti

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

Rok uplatnění

2019

Kód důvěrnosti údajů

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

Název periodika

BMC NEUROL

ISSN

1471-2377

e-ISSN

1471-2377

Svazek periodika

19

Číslo periodika v rámci svazku

1

Stát vydavatele periodika

GB - Spojené království Velké Británie a Severního Irska

Počet stran výsledku

12

Strana od-do

250

Kód UT WoS článku

000492959900001

EID výsledku v databázi Scopus

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