ERIC Number: EJ1250102
Record Type: Journal
Publication Date: 2020-May
Pages: 19
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1360-2322
EISSN: N/A
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
Journal of Applied Research in Intellectual Disabilities, v33 n3 p496-514 May 2020
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.
Descriptors: Down Syndrome, Health Services, Attitudes, Parent Attitudes, Caregiver Attitudes, Residential Programs, Access to Health Care, Individual Needs, Foreign Countries
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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Netherlands
Grant or Contract Numbers: N/A