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

Result code in 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>
Result on the web
<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>

Result language
angličtina
Original language name
The unmet needs of family members of patients with progressive neurological disease in the Czech Republic
Original language description
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.
Czech name
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Czech description
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Type
J<sub>imp</sub> - Article in a specialist periodical, which is included in the Web of Science database
CEP classification
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OECD FORD branch
30304 - Public and environmental health

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

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