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

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          Abstract

          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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          Most cited references33

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          Defining and measuring integrated patient care: promoting the next frontier in health care delivery.

          Mark Friedberg, Peter Rosenthal, Lucian Leape … (2011)
          Integration of care is emerging as a central challenge of health care delivery, particularly for patients with multiple, complex chronic conditions. The authors argue that the concept of "integrated patient care" would benefit from further clarification regarding (a) the object of integration and (b) its essential components, particularly when constructing measures.To address these issues, the authors propose a definition of integrated patient care that distinguishes it from integrated delivery organizations, acknowledging that integrated organizational structures and processes may fail to produce integrated patient care. The definition emphasizes patients' central role as active participants in managing their own health by including patient centeredness as a key element of integrated patient care. Measures based on the proposed definition will enable empirical assessment of the potential relationships between the integration of organizations, the integration of patient care, and patient outcomes, providing valuable guidance to health systems reformers.
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            Evaluating the quality of medical care

            A Donabedian, Avedis DONABEDIAN (2005)
            Article 0 comments Cited 96 times – based on 0 reviews     Review now
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              Clinical practice

              Michel E. Weijerman, J. de Winter (2010)
              Down syndrome (DS) is one of the most common chromosomal abnormalities. Because of medical advances and improvements in overall medical care, the median survival of individuals with DS has increased considerably. This longer life expectancy requires giving the necessary care to the individual with DS over their total longer lifespan. DS medical guidelines are designed for the optimal care of the child in whom a diagnosis of DS has been confirmed. We present an overview of the most important issues related to children with DS based on the most relevant literature currently available.
              Article 0 comments Cited 87 times – based on 0 reviews     Review now
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                Author and article information

                Contributors
                Francine A. van den Driessen Mareeuw:
                ORCID: https://orcid.org/0000-0002-4837-5261
                f.a.vdndriessenmareeuw@uvt.nl
                Journal
                Journal ID (nlm-ta): J Appl Res Intellect Disabil
                Journal ID (iso-abbrev): J Appl Res Intellect Disabil
                Journal ID (doi): 10.1111/(ISSN)1468-3148
                Journal ID (publisher-id): JAR
                Title: Journal of Applied Research in Intellectual Disabilities
                Publisher: John Wiley and Sons Inc. (Hoboken )
                ISSN (Print): 1360-2322
                ISSN (Electronic): 1468-3148
                Publication date (Electronic): 13 December 2019
                Publication date (Print): May 2020
                Volume: 33
                Issue: 3 ( doiID: 10.1111/jar.v33.3 )
                Pages: 496-514
                Affiliations
                [ 1 ] Tranzo Scientific Center for Care and Wellbeing Faculty of Social and Behavioral Sciences Tilburg University Tilburg The Netherlands
                [ 2 ] Jeroen Bosch Hospital ME's‐Hertogenbosch The Netherlands
                [ 3 ] Department for Primary and Community Care Radboud University Medical Center Nijmegen The Netherlands
                [ 4 ] Dichterbij Center for the Intellectually Disabled Gennep The Netherlands
                [ 5 ] Erasmus School of Health Policy and Management Erasmus University Rotterdam The Netherlands
                [ 6 ] National Health Care Institute Diemen The Netherlands
                Author notes
                [*] [* ] Correspondence

                Francine A. van den Driessen Mareeuw, Tranzo, Scientific Center for Care and Wellbeing, Faculty of Social and Behavioral Sciences, Tilburg University, PO Box 90153, 5000 LE Tilburg, The Netherlands.

                Email: f.a.vdndriessenmareeuw@ 123456uvt.nl

                Author information
                https://orcid.org/0000-0002-4837-5261
                Article
                Publisher ID: JAR12692
                DOI: 10.1111/jar.12692
                PMC ID: 7187228
                PubMed ID: 31833622
                SO-VID: 849cf821-ad59-4c10-bcb7-2d7f39dd45b4
                Copyright © © 2019 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.
                License:

                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.

                History
                Date received : 07 March 2019
                Date revision received : 07 November 2019
                Date accepted : 26 November 2019
                Page count
                Figures: 0, Tables: 2, Pages: 19, Words: 13436
                Funding
                Funded by: Fonds NutsOhra , open-funder-registry 10.13039/501100003142;
                Award ID: 1403‐029
                Funded by: Jeroen Bosch Hospital
                Categories
                Subject: Original Article
                Subject: Original Articles
                Custom metadata
                source-schema-version-number 2.0
                cover-date May 2020
                details-of-publishers-convertor Converter:WILEY_ML3GV2_TO_JATSPMC version:5.8.1 mode:remove_FC converted:28.04.2020

                Keywords: down syndrome,netherlands,qualitative methods,quality of health care,quality of life
                Data availability:
                Keywords: down syndrome, netherlands, qualitative methods, quality of health care, quality of life

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