Barriers and facilitators to the access to and use of formal dementia care

Detalhes bibliográficos
Autor(a) principal: Stephan, Astrid
Data de Publicação: 2018
Outros Autores: Bieber, Anja, Hopper, Louise, Joyce, Rachael, Irving, Kate, Zanetti, Orazio, Portolani, Elisa, Kerpershoek, Liselot, Verhey, Frans, De Vugt, Marjolein, Wolfs, Claire, Eriksen, Siren, Røsvik, Janne, Marques, Maria J., Gonçalves-Pereira, Manuel, Sjölund, Britt Marie, Jelley, Hannah, Woods, Bob, Meyer, Gabriele, Handels, Ron, Broda, Anja, Bartoszek, Gabriele, Woods, Bob T., Orrell, Martin, Wimo, Anders, Sköldunger, Anders, Engedal, Knut, Selbæk, Geir, Michelet, Mona, Conceição Balsinha, M., Bárrios, Helena, Machado, Ana
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: https://doi.org/10.1186/s12877-018-0816-1
Resumo: This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project (http://www.jpnd.eu). The project is supported through the following national funding organisations under the aegis of JPND: Germany, Ministry of Education and Research; Ireland, Health research board; Italy, Ministry of Health; the Netherlands, The Netherlands organisation for Health Research and Development; Sweden, The Swedish Research Council for Health, Working Life and Welfare; Norway, The Research Council of Norway; Portugal, Foundation for Science and Technology (FCT - JPND-HC/0001/2012); the United Kingdom, Economic and Social Research Council. The funding organisations did not influence the design of the study or the content of the manuscript. We acknowledge the financial support within the funding programme Open Access Publishing by the German Research Foundation (DFG).
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spelling Barriers and facilitators to the access to and use of formal dementia careFindings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countriesDementiaFocus groupsFormal careInformal carerPerson with dementiaUtilisationGeriatrics and GerontologyThis is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project (http://www.jpnd.eu). The project is supported through the following national funding organisations under the aegis of JPND: Germany, Ministry of Education and Research; Ireland, Health research board; Italy, Ministry of Health; the Netherlands, The Netherlands organisation for Health Research and Development; Sweden, The Swedish Research Council for Health, Working Life and Welfare; Norway, The Research Council of Norway; Portugal, Foundation for Science and Technology (FCT - JPND-HC/0001/2012); the United Kingdom, Economic and Social Research Council. The funding organisations did not influence the design of the study or the content of the manuscript. We acknowledge the financial support within the funding programme Open Access Publishing by the German Research Foundation (DFG).Background: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. Method: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. Results: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. Conclusion: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.Centro de Estudos de Doenças Crónicas (CEDOC)NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)RUNStephan, AstridBieber, AnjaHopper, LouiseJoyce, RachaelIrving, KateZanetti, OrazioPortolani, ElisaKerpershoek, LiselotVerhey, FransDe Vugt, MarjoleinWolfs, ClaireEriksen, SirenRøsvik, JanneMarques, Maria J.Gonçalves-Pereira, ManuelSjölund, Britt MarieJelley, HannahWoods, BobMeyer, GabrieleHandels, RonBroda, AnjaBartoszek, GabrieleWoods, Bob T.Orrell, MartinWimo, AndersSköldunger, AndersEngedal, KnutSelbæk, GeirMichelet, MonaConceição Balsinha, M.Bárrios, HelenaMachado, Ana2018-06-15T22:07:08Z2018-06-042018-06-04T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttps://doi.org/10.1186/s12877-018-0816-1eng1471-2318PURE: 4373084http://www.scopus.com/inward/record.url?scp=85047981002&partnerID=8YFLogxKhttps://doi.org/10.1186/s12877-018-0816-1info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2024-03-11T04:21:39Zoai:run.unl.pt:10362/39434Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T03:31:06.768350Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse
dc.title.none.fl_str_mv Barriers and facilitators to the access to and use of formal dementia care
Findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries
title Barriers and facilitators to the access to and use of formal dementia care
spellingShingle Barriers and facilitators to the access to and use of formal dementia care
Stephan, Astrid
Dementia
Focus groups
Formal care
Informal carer
Person with dementia
Utilisation
Geriatrics and Gerontology
title_short Barriers and facilitators to the access to and use of formal dementia care
title_full Barriers and facilitators to the access to and use of formal dementia care
title_fullStr Barriers and facilitators to the access to and use of formal dementia care
title_full_unstemmed Barriers and facilitators to the access to and use of formal dementia care
title_sort Barriers and facilitators to the access to and use of formal dementia care
author Stephan, Astrid
author_facet Stephan, Astrid
Bieber, Anja
Hopper, Louise
Joyce, Rachael
Irving, Kate
Zanetti, Orazio
Portolani, Elisa
Kerpershoek, Liselot
Verhey, Frans
De Vugt, Marjolein
Wolfs, Claire
Eriksen, Siren
Røsvik, Janne
Marques, Maria J.
Gonçalves-Pereira, Manuel
Sjölund, Britt Marie
Jelley, Hannah
Woods, Bob
Meyer, Gabriele
Handels, Ron
Broda, Anja
Bartoszek, Gabriele
Woods, Bob T.
Orrell, Martin
Wimo, Anders
Sköldunger, Anders
Engedal, Knut
Selbæk, Geir
Michelet, Mona
Conceição Balsinha, M.
Bárrios, Helena
Machado, Ana
author_role author
author2 Bieber, Anja
Hopper, Louise
Joyce, Rachael
Irving, Kate
Zanetti, Orazio
Portolani, Elisa
Kerpershoek, Liselot
Verhey, Frans
De Vugt, Marjolein
Wolfs, Claire
Eriksen, Siren
Røsvik, Janne
Marques, Maria J.
Gonçalves-Pereira, Manuel
Sjölund, Britt Marie
Jelley, Hannah
Woods, Bob
Meyer, Gabriele
Handels, Ron
Broda, Anja
Bartoszek, Gabriele
Woods, Bob T.
Orrell, Martin
Wimo, Anders
Sköldunger, Anders
Engedal, Knut
Selbæk, Geir
Michelet, Mona
Conceição Balsinha, M.
Bárrios, Helena
Machado, Ana
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv Centro de Estudos de Doenças Crónicas (CEDOC)
NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)
RUN
dc.contributor.author.fl_str_mv Stephan, Astrid
Bieber, Anja
Hopper, Louise
Joyce, Rachael
Irving, Kate
Zanetti, Orazio
Portolani, Elisa
Kerpershoek, Liselot
Verhey, Frans
De Vugt, Marjolein
Wolfs, Claire
Eriksen, Siren
Røsvik, Janne
Marques, Maria J.
Gonçalves-Pereira, Manuel
Sjölund, Britt Marie
Jelley, Hannah
Woods, Bob
Meyer, Gabriele
Handels, Ron
Broda, Anja
Bartoszek, Gabriele
Woods, Bob T.
Orrell, Martin
Wimo, Anders
Sköldunger, Anders
Engedal, Knut
Selbæk, Geir
Michelet, Mona
Conceição Balsinha, M.
Bárrios, Helena
Machado, Ana
dc.subject.por.fl_str_mv Dementia
Focus groups
Formal care
Informal carer
Person with dementia
Utilisation
Geriatrics and Gerontology
topic Dementia
Focus groups
Formal care
Informal carer
Person with dementia
Utilisation
Geriatrics and Gerontology
description This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project (http://www.jpnd.eu). The project is supported through the following national funding organisations under the aegis of JPND: Germany, Ministry of Education and Research; Ireland, Health research board; Italy, Ministry of Health; the Netherlands, The Netherlands organisation for Health Research and Development; Sweden, The Swedish Research Council for Health, Working Life and Welfare; Norway, The Research Council of Norway; Portugal, Foundation for Science and Technology (FCT - JPND-HC/0001/2012); the United Kingdom, Economic and Social Research Council. The funding organisations did not influence the design of the study or the content of the manuscript. We acknowledge the financial support within the funding programme Open Access Publishing by the German Research Foundation (DFG).
publishDate 2018
dc.date.none.fl_str_mv 2018-06-15T22:07:08Z
2018-06-04
2018-06-04T00:00:00Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv https://doi.org/10.1186/s12877-018-0816-1
url https://doi.org/10.1186/s12877-018-0816-1
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv 1471-2318
PURE: 4373084
http://www.scopus.com/inward/record.url?scp=85047981002&partnerID=8YFLogxK
https://doi.org/10.1186/s12877-018-0816-1
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.source.none.fl_str_mv reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron:RCAAP
instname_str Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron_str RCAAP
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reponame_str Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
collection Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
repository.name.fl_str_mv Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
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