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Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study

BACKGROUND: Dementia is one of the main causes of disability and dependence in older people, and people with dementia need comprehensive healthcare services, preferably in their own homes. A well-organized home care service designed for people with dementia is necessary to meet their needs for healt...

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Autores principales: Hoel, Kari-Anne, Rokstad, Anne Marie Mork, Feiring, Ingvild Hjorth, Lichtwarck, Bjørn, Selbæk, Geir, Bergh, Sverre
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8299610/
https://www.ncbi.nlm.nih.gov/pubmed/34294078
http://dx.doi.org/10.1186/s12913-021-06722-8
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author Hoel, Kari-Anne
Rokstad, Anne Marie Mork
Feiring, Ingvild Hjorth
Lichtwarck, Bjørn
Selbæk, Geir
Bergh, Sverre
author_facet Hoel, Kari-Anne
Rokstad, Anne Marie Mork
Feiring, Ingvild Hjorth
Lichtwarck, Bjørn
Selbæk, Geir
Bergh, Sverre
author_sort Hoel, Kari-Anne
collection PubMed
description BACKGROUND: Dementia is one of the main causes of disability and dependence in older people, and people with dementia need comprehensive healthcare services, preferably in their own homes. A well-organized home care service designed for people with dementia is necessary to meet their needs for health- and social care. Therefore, it is important to gain knowledge about how people with dementia experience the home care service and if the service responds to their wishes and needs. The aim of this study was to explore the experience of home care services among people with dementia, to understand the continuity in services, how the service was adapted to people with dementia, and how the patient experienced person-centered care and shared decision-making. METHODS: We used a qualitative, exploratory design based on a phenomenological-hermeneutic approach and performed individual in-depth interviews with persons with dementia. A convenience sample of 12 persons with moderate to severe degrees of dementia from four Norwegian municipalities participated in the study. The interviews were conducted in February 2019. RESULTS: The findings identified that the participants appreciated the possibility to stay safely in their own homes and mostly experienced good support from staff. They expressed various views and understanding of the service and experienced limited opportunities for user involvement and individualized, tailored service. The overall theme summarizing the findings was: “It is difficult for people with dementia to understand and influence home care services, but the services facilitate the possibility to stay at home and feel safe with support from staff.” CONCLUSION: The participants did not fully understand the organization of the care and support they received from the home care services, but they adapted to the service without asking for changes based on their needs or desires. Although person-centered care is recommended both nationally and internationally, the participants experienced little inclusion in defining the service they received, and it was perceived as unclear how they could participate in shared decision-making.
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spelling pubmed-82996102021-07-28 Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study Hoel, Kari-Anne Rokstad, Anne Marie Mork Feiring, Ingvild Hjorth Lichtwarck, Bjørn Selbæk, Geir Bergh, Sverre BMC Health Serv Res Research BACKGROUND: Dementia is one of the main causes of disability and dependence in older people, and people with dementia need comprehensive healthcare services, preferably in their own homes. A well-organized home care service designed for people with dementia is necessary to meet their needs for health- and social care. Therefore, it is important to gain knowledge about how people with dementia experience the home care service and if the service responds to their wishes and needs. The aim of this study was to explore the experience of home care services among people with dementia, to understand the continuity in services, how the service was adapted to people with dementia, and how the patient experienced person-centered care and shared decision-making. METHODS: We used a qualitative, exploratory design based on a phenomenological-hermeneutic approach and performed individual in-depth interviews with persons with dementia. A convenience sample of 12 persons with moderate to severe degrees of dementia from four Norwegian municipalities participated in the study. The interviews were conducted in February 2019. RESULTS: The findings identified that the participants appreciated the possibility to stay safely in their own homes and mostly experienced good support from staff. They expressed various views and understanding of the service and experienced limited opportunities for user involvement and individualized, tailored service. The overall theme summarizing the findings was: “It is difficult for people with dementia to understand and influence home care services, but the services facilitate the possibility to stay at home and feel safe with support from staff.” CONCLUSION: The participants did not fully understand the organization of the care and support they received from the home care services, but they adapted to the service without asking for changes based on their needs or desires. Although person-centered care is recommended both nationally and internationally, the participants experienced little inclusion in defining the service they received, and it was perceived as unclear how they could participate in shared decision-making. BioMed Central 2021-07-22 /pmc/articles/PMC8299610/ /pubmed/34294078 http://dx.doi.org/10.1186/s12913-021-06722-8 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Hoel, Kari-Anne
Rokstad, Anne Marie Mork
Feiring, Ingvild Hjorth
Lichtwarck, Bjørn
Selbæk, Geir
Bergh, Sverre
Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study
title Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study
title_full Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study
title_fullStr Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study
title_full_unstemmed Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study
title_short Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study
title_sort person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8299610/
https://www.ncbi.nlm.nih.gov/pubmed/34294078
http://dx.doi.org/10.1186/s12913-021-06722-8
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