The Unmet Needs of Patients With Progressive Neurological Diseases in the Czech Republic: A Qualitative Study

Kód výsledku v IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F61988987%3A17110%2F19%3AA2001YY8" target="_blank" >RIV/61988987:17110/19:A2001YY8 - isvavai.cz</a>

Výsledek na webu

<a href="https://journals.sagepub.com/doi/10.1177/0825859718800489" target="_blank" >https://journals.sagepub.com/doi/10.1177/0825859718800489</a>

DOI - Digital Object Identifier

<a href="http://dx.doi.org/10.1177/0825859718800489" target="_blank" >10.1177/0825859718800489</a>

Jazyk výsledku

angličtina

Název v původním jazyce

The Unmet Needs of Patients With Progressive Neurological Diseases in the Czech Republic: A Qualitative Study

Popis výsledku v původním jazyce

Aim: The aim of our research was to explore the unfulfilled needs of patients with a progressive neurological disease in advanced stage of the illness within the current system of health and social care in the Czech Republic. Design and Setting: Qualitative research (grounded theory) was used to conceptualize the patterns of unmet palliative care needs in Czech Republic. Methods: The data collection method comprised individual, in-depth interviews (n = 19) and focus groups (n = 4) where a total of 52 respondents participated (patients with progressive neurological diseases [PNDs], family members, and professionals). Results: Two main categories of unfulfilled needs were determined (life with the disease, professional help), and they were described in the context of the 3 crucial themes identified in the study-the symptoms of the advanced stage of the disease resulted in substantial reduction of physical self-sufficiency, loss of autonomy, and social isolation; the level of dependence on the support and help of others increased; the patients also highlighted several problems related to health-care services. Conclusion: The unmet needs should be taken into consideration when creating the concept of the neuropalliative and rehabilitation care, including the mental health support plan, because of the emotional, behavioral, and cognitive disorders that frequently occur in the lives of a substantial amount of patients with PND.

Název v anglickém jazyce

The Unmet Needs of Patients With Progressive Neurological Diseases in the Czech Republic: A Qualitative Study

Popis výsledku anglicky

Aim: The aim of our research was to explore the unfulfilled needs of patients with a progressive neurological disease in advanced stage of the illness within the current system of health and social care in the Czech Republic. Design and Setting: Qualitative research (grounded theory) was used to conceptualize the patterns of unmet palliative care needs in Czech Republic. Methods: The data collection method comprised individual, in-depth interviews (n = 19) and focus groups (n = 4) where a total of 52 respondents participated (patients with progressive neurological diseases [PNDs], family members, and professionals). Results: Two main categories of unfulfilled needs were determined (life with the disease, professional help), and they were described in the context of the 3 crucial themes identified in the study-the symptoms of the advanced stage of the disease resulted in substantial reduction of physical self-sufficiency, loss of autonomy, and social isolation; the level of dependence on the support and help of others increased; the patients also highlighted several problems related to health-care services. Conclusion: The unmet needs should be taken into consideration when creating the concept of the neuropalliative and rehabilitation care, including the mental health support plan, because of the emotional, behavioral, and cognitive disorders that frequently occur in the lives of a substantial amount of patients with PND.

Druh

J_imp - Článek v periodiku v databázi Web of Science

CEP obor

—

OECD FORD obor

30305 - Occupational 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

JOURNAL OF PALLIATIVE CARE

ISSN

0825-8597

e-ISSN

2369-5293

Svazek periodika

34

Číslo periodika v rámci svazku

1

Stát vydavatele periodika

US - Spojené státy americké

Počet stran výsledku

9

Strana od-do

38-46

Kód UT WoS článku

000454135400009

EID výsledku v databázi Scopus

2-s2.0-85058426635