Down Syndrome Cures: Perspectives of People with Down Syndrome and Their Parents

Autor/inn/en	Rogers, Julie M.; Weaver, Amy L.; Havyer, Rachel D.
Titel	Down Syndrome Cures: Perspectives of People with Down Syndrome and Their Parents
Quelle	In: American Journal on Intellectual and Developmental Disabilities, 127 (2022) 3, S.194-212 (19 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1944-7515
Schlagwörter	Down Syndrome; Intervention; Self Concept; Parent Attitudes; Drug Therapy; Alzheimers Disease; Cancer; Quality of Life + Suchen Sie Ihr Suchwort? 'Downs Syndrome; Down''s Syndrome'; Down-Syndrom; Selbstkonzept; Elternverhalten; Carcinoma; Karzinom; Krebs (med); Krebserkrankung; Lebensqualität
Abstract	Down syndrome (DS) research is advancing rapidly, yet efforts have raised ethical questions. This mixed methods study describes views of people with DS (self-advocates) and their parents regarding medical interventions for DS. Responses from 35/171 (20.5%) self-advocates and 430/867 (49.6%) parents showed the majority of self-advocates were glad they have DS (27/35; 77.1%) and liked who they are (33/35; 94.3%), but did want to learn faster (23/35; 65.7%). Parents much more commonly agreed with a willingness to give medications to prevent Alzheimer's disease (427/429; 99.5%) or blood cancer (428/430; 99.5%) as compared with a medicine to cure DS (225/425; 52.9%). Qualitative comments intertwined DS with identity, yet indicated desire for improved quality of life and opportunities. Responses decoupled DS itself from the complications of DS, with treatment of complications being more acceptable. (As Provided).
Anmerkungen	American Association on Intellectual and Developmental Disabilities. P.O. Box 1897, Lawrence, KS 66044-1897. Tel: 785-843-1235; Fax: 785-843-1274; e-mail: AJMR@allenpress.com; Web site: https://meridian.allenpress.com/aaidd
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01