Designing an International Survey for Organisations Serving People with Down Syndrome

Autor/inn/en	Kats, Daniel J.; Skotko, Brian G.; de Graaf, Gert; Skladzien, Ellen; Hooper, Brian Takashi; Mordi, Rose; Mykhailenko, Tetiana; Buckley, Frank; Patsiogiannis, Vasiliki; Krell, Kavita; Haugen, Kelsey; Donelan, Karen
Titel	Designing an International Survey for Organisations Serving People with Down Syndrome
Quelle	In: Journal of Applied Research in Intellectual Disabilities, 36 (2023) 3, S.497-506 (10 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Kats, Daniel J.) ORCID (Skotko, Brian G.) ORCID (de Graaf, Gert) ORCID (Skladzien, Ellen)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1360-2322
DOI	10.1111/jar.13071
Schlagwörter	Down Syndrome; Social Services; Questionnaires; Test Construction; Test Items; Nonprofit Organizations; Education; Inclusion; Health Services; Social Problems; Policy + Suchen Sie Ihr Suchwort? 'Downs Syndrome; Down''s Syndrome'; Down-Syndrom; Social service; Soziale Dienstleistung; Soziale Dienste; Fragebogen; Testaufbau; Test content; Testaufgabe; Nonprofit-Organisation; Bildung; Erziehung; Inklusion; Health service; Gesundheitsdienst; Gesundheitswesen; Social problem; Soziales Problem; Politik
Abstract	Background: Down syndrome is the most common liveborn genetic condition. However, there are no surveys measuring societal services and supports for people with Down syndrome. We developed a questionnaire so that initiatives could be targeted towards countries most in need of assistance. Method: We formed a geographically diverse group of physicians, family members of people with Down syndrome, and members of Down syndrome not-for-profit organisations to create a survey of societal services and supports. We used a modified Delphi method and disseminated the survey to Down syndrome non-profit organisations worldwide. Results: Our survey consists of 61 items categorised within five domains: Education, Community Inclusion, Independence, Healthcare, and Social and Policy Issues. Conclusions: We developed a survey to measure societal services and supports available to people with Down syndrome as perceived by organisational leaders. Our methods might serve as a blueprint for other populations of people with intellectual and developmental disabilities. (As Provided).
Anmerkungen	Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01