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

F. A. van den Driessen Mareeuw; A. M. W. Coppus; D. M. J. Delnoij; E. de Vries

doi:10.1111/jar.12692

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

F. A. van den Driessen Mareeuw^*, A. M. W. Coppus, D. M. J. Delnoij, E. de Vries

^*Corresponding author for this work

Research output: Contribution to journal › Article › Scientific › peer-review

18 Citations (Scopus)

113 Downloads (Pure)

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.

Original language	English
Pages (from-to)	496-514
Journal	Journal of Applied Research in Intellectual Disabilities
Volume	33
Issue number	3
DOIs	https://doi.org/10.1111/jar.12692
Publication status	Published - 2020

Keywords

Down syndrome
Netherlands
qualitative methods
quality of health care
quality of life
PATIENT-CENTERED CARE
OF-LIFE
INTELLECTUAL DISABILITIES
CHILDREN
ADULTS
EXPERIENCES
OUTCOMES
IMPACT
NEEDS

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Tranzo vd Driessen Mareeuw quality of health JoARiID 2020Final published version, 575 KB

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title = "Quality of health care according to people with Down syndrome, their parents and support staff: A qualitative exploration",

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.",

keywords = "Down syndrome, Netherlands, qualitative methods, quality of health care, quality of life, PATIENT-CENTERED CARE, OF-LIFE, INTELLECTUAL DISABILITIES, CHILDREN, ADULTS, EXPERIENCES, OUTCOMES, IMPACT, NEEDS",

author = "{van den Driessen Mareeuw}, {F. A.} and Coppus, {A. M. W.} and Delnoij, {D. M. J.} and {de Vries}, E.",

note = "This work was financially supported by the Fonds NutsOhra (fund), Amsterdam, the Netherlands [grant number: 1403‐029]; and the Jeroen Bosch Hospital, {\textquoteleft}s‐Hertogenbosch, the Netherlands.",

year = "2020",

doi = "10.1111/jar.12692",

language = "English",

volume = "33",

pages = "496--514",

journal = "Journal of Applied Research in Intellectual Disabilities",

issn = "1360-2322",

publisher = "Wiley-Blackwell Publishing Ltd",

number = "3",

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Quality of health care according to people with Down syndrome, their parents and support staff: A qualitative exploration. / van den Driessen Mareeuw, F. A.; Coppus, A. M. W.; Delnoij, D. M. J. et al.
In: Journal of Applied Research in Intellectual Disabilities, Vol. 33, No. 3, 2020, p. 496-514.

Research output: Contribution to journal › Article › Scientific › peer-review

TY - JOUR

T1 - Quality of health care according to people with Down syndrome, their parents and support staff

T2 - A qualitative exploration

AU - van den Driessen Mareeuw, F. A.

AU - Coppus, A. M. W.

AU - Delnoij, D. M. J.

AU - de Vries, E.

N1 - This work was financially supported by the Fonds NutsOhra (fund), Amsterdam, the Netherlands [grant number: 1403‐029]; and the Jeroen Bosch Hospital, ‘s‐Hertogenbosch, the Netherlands.

PY - 2020

Y1 - 2020

N2 - 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.

AB - 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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KW - INTELLECTUAL DISABILITIES

KW - CHILDREN

KW - ADULTS

KW - EXPERIENCES

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KW - IMPACT

KW - NEEDS

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JO - Journal of Applied Research in Intellectual Disabilities

JF - Journal of Applied Research in Intellectual Disabilities

IS - 3

ER -

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

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