Down Syndrome Cures: Perspectives of People With Down Syndrome and Their Parents.

IF 1.9 4区医学 Q1 EDUCATION, SPECIAL

Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2022-04-20 DOI:10.1352/1944-7558-127.3.194

Julie M G Rogers, A. Weaver, Rachel D. Havyer

引用次数: 0

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.

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唐氏综合症的治疗:唐氏综合症患者及其父母的观点。

唐氏综合症(DS)的研究进展迅速，但也引发了伦理问题。本混合方法研究描述了退行性痴呆患者及其父母对退行性痴呆医疗干预的看法。35/171(20.5%)的自我倡导者和430/867(49.6%)的自我倡导者的回答显示，大多数自我倡导者很高兴他们有DS (27/35;77.1%)，喜欢自己的样子(33/35;94.3%)，但确实想学得更快(23/35;65.7%)。父母更普遍同意给予药物预防阿尔茨海默病的意愿(427/429;99.5%)或血癌(428/430;99.5%)与治疗DS的药物相比(225/425;52.9%)。定性评论与身份交织在一起，但表明了对提高生活质量和机会的渴望。反应将退行性椎体滑移本身与退行性椎体滑移的并发症分离开来，并发症的治疗更容易被接受。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Ajidd-American Journal on Intellectual and Developmental Disabilities Multiple-

CiteScore

3.10

自引率

4.80%

发文量

期刊介绍： The American Journal on Intellectual and Developmental Disabilities (Print ISSN: 1944–7515; Online ISSN: 1944–7558) is published by the American Association on Intellectual and Developmental Disabilities. It is a scientifi c, scholarly, and archival multidisciplinary journal for reporting original contributions of the highest quality to knowledge of intellectual disabilities, its causes, treatment, and prevention.