ArticleJournal of applied research in intellectual disabilities : JARID2023
Indicators of health in Down syndrome: A virtual focus group study with patients and their parents.
Article in Journal of applied research in intellectual disabilities : JARID, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04631237 (Developing a Down Syndrome Health Instrument), which is not on this map. Cited by 10 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Developing a Down Syndrome Health Instrument
Who cites it
10 citing papers in PubMed.
- 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
- Caregivers' Perspectives on Medical Management and Its Helpfulness in Down Syndrome.American journal of medical genetics. Part A · 2026Article
- Bothersome and Impactful Health Conditions in Children and Adolescents with Down Syndrome.The Journal of pediatrics · 2025Observational
- Research Priorities of Individuals and Families With Sex Chromosome Aneuploidies.American journal of medical genetics. Part A · 2025Article
- Successful (and Unsuccessful) Recruitment Approaches and Participant Loss in a Down Syndrome Survey.American journal on intellectual and developmental disabilities · 2025Article
- Research Priorities of Individuals and Families with Sex Chromosome Aneuploidies.medRxiv : the preprint server for health sciences · 2024Article
- Walking capacity and its association with quality of life among children with down syndrome in Saudi Arabia.BMC pediatrics · 2024Article
- The Potential of ChatGPT in Assisting Children with Down Syndrome.Annals of biomedical engineering · 2023Article
- Global health measures from a National Down Syndrome Registry.American journal of medical genetics. Part A · 2023Article
- Views on the impact of the COVID-19 pandemic on health in people with Down syndrome from diverse backgrounds.American journal of medical genetics. Part A · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
backgroundDown syndrome has a unique medical and psychological profile. To date, few studies have asked individuals with Down syndrome about their views of health.
methodsEight focus groups of 20 parents and 8 individuals with Down syndrome, were conducted virtually via videoconferencing to obtain participants' views of health indicators. Focus group moderators employed some modifications for individuals with Down syndrome, including simplified language and use of graphics. Transcripts were coded using a hybrid inductive/deductive framework and thematically analysed using the Framework Method.
resultsWe describe lessons learned in conducting virtual focus groups of individuals with Down syndrome and their parents. Individuals with Down syndrome could describe their views of health indicators and identified many of the same topics as their parents. Both groups discussed physical, mental, and social health components. However, people with Down syndrome gave a more restricted range of examples, but with different nuances than parents.
conclusionPartcipants discussed physical, social, and mental well-being components of health in Down syndrome. Interviewing individuals with Down syndrome in virtual focus groups with appropriate modifications added important self-report health information.
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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.