The unmet needs of family members of patients with progressive neurological disease in the Czech Republic

Kód výsledku v IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F61988987%3A17110%2F19%3AA200212J" target="_blank" >RIV/61988987:17110/19:A200212J - isvavai.cz</a>

Výsledek na webu

<a href="https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0214395&type=printable" target="_blank" >https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0214395&type=printable</a>

DOI - Digital Object Identifier

<a href="http://dx.doi.org/10.1371/journal.pone.0214395" target="_blank" >10.1371/journal.pone.0214395</a>

Jazyk výsledku

angličtina

Název v původním jazyce

The unmet needs of family members of patients with progressive neurological disease in the Czech Republic

Popis výsledku v původním jazyce

BackgroundCaring for patients with a progressive neurological disease (PND) causes stress that may impact on the state of health as well as the quality of life of the caring family.ObjectiveThe aim of the study was to explore the unmet needs of the family members of patients with PND in advanced stages.MethodsGrounded theory (constructivist approach) was used to conceptualize the patterns of unmet care needs. Data collection methodology involved focus groups (n = 4) and interviews, in which a total of 52 people participated (patients, family members, and professionals).ResultsBased on the data analysis, three domains (family situation, role of the caregiver, and professional help) were identified, which illustrate the unmet needs. In particular, lack of information about the disease and available support available resulted in a deterioration mutual understanding between the patient, family, and the medical staff; also increased stress for the caregiver, and lowered quality of life for the caring family.ConclusionFamily members expect health workers to provide them with support, which includes informing them about the possible help available from the health and social welfare systems.

Název v anglickém jazyce

The unmet needs of family members of patients with progressive neurological disease in the Czech Republic

Popis výsledku anglicky

BackgroundCaring for patients with a progressive neurological disease (PND) causes stress that may impact on the state of health as well as the quality of life of the caring family.ObjectiveThe aim of the study was to explore the unmet needs of the family members of patients with PND in advanced stages.MethodsGrounded theory (constructivist approach) was used to conceptualize the patterns of unmet care needs. Data collection methodology involved focus groups (n = 4) and interviews, in which a total of 52 people participated (patients, family members, and professionals).ResultsBased on the data analysis, three domains (family situation, role of the caregiver, and professional help) were identified, which illustrate the unmet needs. In particular, lack of information about the disease and available support available resulted in a deterioration mutual understanding between the patient, family, and the medical staff; also increased stress for the caregiver, and lowered quality of life for the caring family.ConclusionFamily members expect health workers to provide them with support, which includes informing them about the possible help available from the health and social welfare systems.

Druh

J_imp - Článek v periodiku v databázi Web of Science

CEP obor

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OECD FORD obor

30304 - Public and environmental health

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

Plos One

ISSN

1932-6203

e-ISSN

—

Svazek periodika

14

Číslo periodika v rámci svazku

3

Stát vydavatele periodika

US - Spojené státy americké

Počet stran výsledku

17

Strana od-do

e0214395

Kód UT WoS článku

000462157600061

EID výsledku v databázi Scopus

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