Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration

BACKGROUND: People with Down syndrome (PDS) have complex healthcare needs. Little is known about the quality of health care for PDS, let alone how it is appraised by PDS and their caregivers. This study explores the perspectives of PDS, their parents and support staff regarding quality in health car...

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Autores principales: van den Driessen Mareeuw, Francine A., Coppus, Antonia M. W., Delnoij, Diana M. J., de Vries, Esther
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2019
Materias:
Original Articles
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7187228/
https://www.ncbi.nlm.nih.gov/pubmed/31833622
http://dx.doi.org/10.1111/jar.12692
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author van den Driessen Mareeuw, Francine A.
Coppus, Antonia M. W.
Delnoij, Diana M. J.
de Vries, Esther
author_facet van den Driessen Mareeuw, Francine A.
Coppus, Antonia M. W.
Delnoij, Diana M. J.
de Vries, Esther
author_sort van den Driessen Mareeuw, Francine A.
collection PubMed
description BACKGROUND: People with Down syndrome (PDS) have complex healthcare needs. Little is known about the quality of health care for PDS, let alone how it is appraised by PDS and their caregivers. This study explores the perspectives of PDS, their parents and support staff regarding quality in health care for PDS. METHOD: The present authors conducted semi‐structured interviews with 18 PDS and 15 parents, and focus groups with 35 support staff members (of PDS residing in assisted living facilities) in the Netherlands. RESULTS: According to the participants, healthcare quality entails well‐coordinated health care aligned with other support and care systems, a person‐centred and holistic approach, including respect, trust and provider–patient communication adapted to the abilities of PDS. CONCLUSIONS: Our findings may be used to improve health care for PDS, and provide insight into how health care could match the specific needs of PDS.
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spelling pubmed-71872282020-04-28 Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration van den Driessen Mareeuw, Francine A. Coppus, Antonia M. W. Delnoij, Diana M. J. de Vries, Esther J Appl Res Intellect Disabil Original Articles BACKGROUND: People with Down syndrome (PDS) have complex healthcare needs. Little is known about the quality of health care for PDS, let alone how it is appraised by PDS and their caregivers. This study explores the perspectives of PDS, their parents and support staff regarding quality in health care for PDS. METHOD: The present authors conducted semi‐structured interviews with 18 PDS and 15 parents, and focus groups with 35 support staff members (of PDS residing in assisted living facilities) in the Netherlands. RESULTS: According to the participants, healthcare quality entails well‐coordinated health care aligned with other support and care systems, a person‐centred and holistic approach, including respect, trust and provider–patient communication adapted to the abilities of PDS. CONCLUSIONS: Our findings may be used to improve health care for PDS, and provide insight into how health care could match the specific needs of PDS. John Wiley and Sons Inc. 2019-12-13 2020-05 /pmc/articles/PMC7187228/ /pubmed/31833622 http://dx.doi.org/10.1111/jar.12692 Text en © 2019 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd. This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle Original Articles
van den Driessen Mareeuw, Francine A.
Coppus, Antonia M. W.
Delnoij, Diana M. J.
de Vries, Esther
Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration
title Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration
title_full Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration
title_fullStr Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration
title_full_unstemmed Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration
title_short Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration
title_sort quality of health care according to people with down syndrome, their parents and support staff—a qualitative exploration
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7187228/
https://www.ncbi.nlm.nih.gov/pubmed/31833622
http://dx.doi.org/10.1111/jar.12692
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