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

Francine A van den Driessen Mareeuw; Antonia M W Coppus; Diana M J Delnoij; Esther 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

J Appl Res Intellect Disabil. 2020 May;33(3):496-514. doi: 10.1111/jar.12692. Epub 2019 Dec 13.

Authors

Francine A van den Driessen Mareeuw^{1

2}, Antonia M W Coppus^{3

4}, Diana M J Delnoij^{5

6}, Esther de Vries^{1

2}

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.

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.

MeSH terms

Adolescent
Adult
Aged
Assisted Living Facilities / standards*
Caregivers
Down Syndrome / rehabilitation*
Female
Focus Groups
Health Personnel / standards*
Humans
Male
Middle Aged
Netherlands
Parents
Professional-Patient Relations*
Qualitative Research
Quality of Health Care / standards*
Quality of Life*
Young Adult

Abstract

MeSH terms

Grants and funding