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.