Designing an international survey for organisations serving people with Down syndrome.
J Appl Res Intellect Disabil
; 36(3): 497-506, 2023 May.
Article
em En
| MEDLINE
| ID: mdl-36655393
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.Palavras-chave
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Síndrome de Down
/
Deficiência Intelectual
Idioma:
En
Ano de publicação:
2023
Tipo de documento:
Article