ArticleJournal of applied research in intellectual disabilities : JARID2020
Quality of health care according to people with Down syndrome, their parents and support staff-A qualitative exploration.
Article in Journal of applied research in intellectual disabilities : JARID, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
What it found
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Who cites it
20 citing papers in PubMed, 42 citations in OpenAlex.
- Exploring Parents' Values in Healthcare Decision-Making for Rare Genetic Neurodevelopmental Disorders: A Qualitative Study to Inform Guideline Development.Journal of intellectual disability research : JIDR · 2026Article
- Values of Individuals With Rare Genetic Neurodevelopmental Disorders and Their Family/Caregivers in Healthcare: A Scoping Review to Inform Guideline Development.Journal of intellectual disability research : JIDR · 2026Article
- Caregiving Demands and Depression Symptoms among Caregivers of Individuals with Down Syndrome during the COVID-19 Pandemic.medRxiv : the preprint server for health sciences · 2026Article
- Primary caregivers' perceptions of challenges in dental and orthodontic care for children with Down syndrome.International dental journal · 2026Article
- Acute kidney injury and chronic kidney disease in individuals with Down syndrome: a nationwide cohort study.Clinical kidney journal · 2026Article
- Experiences of caregivers and healthcare providers regarding health services for children with Down syndrome in Karachi; Pakistan.PLOS global public health · 2026Article
- Prevalence, Spectrum, and Management of Thyroid Dysfunction in Children with Down Syndrome: A Retrospective Study from Southern Saudi Arabia.Children (Basel, Switzerland) · 2025Article
- Metabolic, Hematological, and Functional Health in Adults with Down Syndrome and Significance of Parental Health Literacy: A Cross-Sectional Study.Healthcare (Basel, Switzerland) · 2025Article
- Navigating Barriers to Dental Care for Patients with Down Syndrome: A Scoping Review of Challenges and Strategies.Children (Basel, Switzerland) · 2025Review
- Care needs of chronically ill patients with intellectual disabilities in Dutch general practice: patients' and providers' perspectives.BMC health services research · 2024Article
- Lipid Profile, Eating Habit, and Physical Activity in Children with Down Syndrome: A Prospective Study.Diseases (Basel, Switzerland) · 2024Article
- A biophysiological framework exploring factors affecting speech and swallowing in clinical populations: focus on individuals with Down syndrome.Frontiers in psychology · 2023Article
- Destination unknown: Parents and healthcare professionals' perspectives on transition from paediatric to adult care in Down syndrome.Journal of applied research in intellectual disabilities : JARID · 2022Article
- Dental health care for children with Down syndrome: Parents' description of their children's needs in dental health care settings.European journal of oral sciences · 2022Article
- This Is My Baby Interview: An Adaptation to the Spanish Language and Culture.Children (Basel, Switzerland) · 2022Article
- Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families.Children (Basel, Switzerland) · 2021Article
- Caregivers' perceptions and experience of caring for persons with Down syndrome in Kuwait: a qualitative study.International journal of developmental disabilities · 2021Article
- Capturing the complexity of healthcare for people with Down syndrome in quality indicators - a Delphi study involving healthcare professionals and patient organisations.BMC health services research · 2020Article
- Quality of health care according to people with Down syndrome, their parents and support staff-A qualitative exploration.Journal of applied research in intellectual disabilities : JARID · 2020Article
- Providing person-centered care for patients with complex healthcare needs: A qualitative study.PloS one · 2020Article
Corrections and comments
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Authors and funding
4 authors at 3 institutions in 2 countries.
Funding
Abstract
backgroundPeople 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.
methodThe 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.
resultsAccording 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.
conclusionsOur 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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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.