平等的决定权

IF 1.3 Q3 EDUCATION, SPECIAL Advances in Neurodevelopmental Disorders Pub Date : 2023-09-02 DOI:10.1007/s41252-023-00345-2
Justine O’Neill, Anthony Mulholland, Len Robinson, Kerry Watson, Basak Batmaz, Nicole Meikle
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引用次数: 0

摘要

目标智障人士并不总能参与研究,也无法获得学术研究文章。本研究是与智障人士就澳大利亚背景下的人权和决策问题共同开展的。文章的目的是了解智障人士对决策的看法,特别是:(1) 决策时的感受;(2) 决策时的情况;(3) 决策时获得支持的权利。在获得参与者的回答后,我们进行了记录,确定了共同的主题,并对观点进行了整理。由智障人士和非智障人士组成的作者团队在撰写文章时使用了浅显易懂的词语、简短的句子和图片,使信息通俗易懂。易读文章与其他有智障生活经验的参与者一起进行了测试,以确保其无障碍。结果研究分享了(1)做决定的难点和(2)如何让智障人士生活得更好。智障人士谈到了必须证明自己残疾的负担,以及无法获得易于理解的信息或决策支持。结论澳大利亚可以采取行动,尊重智障人士参与决定自己生活的人权,包括制定法律,规定残疾人有权获得决策支持。
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Equal Right to Decide

Objectives

People with intellectual disability are not always included in research or able to access academic research articles. This study has been co-conducted with people with intellectual disability about human rights and decision-making in the Australian context. The purpose of the article is to understand the perspectives of people with intellectual disability about decision-making, specifically (1) how people feel about making decisions, (2) what happens when they make decisions, and (3) the right to support for decision-making.

Methods

Participants shared their lived experience of decision-making as a person with intellectual disability. Responses were acquired from participants followed by a recording process, identifying common themes, and organising ideas. A team of authors with and without intellectual disability wrote the article using easy words, short sentences, and pictures to make the information easy to understand. The Easy Read article was tested with other participants with lived experience of intellectual disability to ensure it was accessible.

Results

The research shares (1) what is hard about making decisions and (2) what would make life better for people with intellectual disability. People with intellectual disability talked about the burden of having to prove their disability and not getting information that is easy to understand or support for decision-making.

Conclusions

There is action Australia can take to respect the human rights of people with intellectual disability to be involved in decisions about their own lives, including making a law that says people with disability have the right to support for decision-making.

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来源期刊
Advances in Neurodevelopmental Disorders
Advances in Neurodevelopmental Disorders Social Sciences-Social Sciences (miscellaneous)
CiteScore
2.10
自引率
0.00%
发文量
72
期刊介绍: Advances in Neurodevelopmental Disorders publishes high-quality research in the broad area of neurodevelopmental disorders across the lifespan. Study participants may include individuals with:Intellectual and developmental disabilitiesGlobal developmental delayCommunication disordersLanguage disordersSpeech sound disordersChildhood-onset fluency disorders (e.g., stuttering)Social (e.g., pragmatic) communication disordersUnspecified communication disordersAutism spectrum disorder (ASD)Attention-deficit/hyperactivity disorder (ADHD), specified and unspecifiedSpecific learning disordersMotor disordersDevelopmental coordination disordersStereotypic movement disorderTic disorders, specified and unspecifiedOther neurodevelopmental disorders, specified and unspecifiedPapers may also include studies of participants with neurodegenerative disorders that lead to a decline in intellectual functioning, including Alzheimer’s disease, amyotrophic lateral sclerosis, Creutzfeldt-Jakob disease, vascular dementia, Lewy body dementia, frontotemporal dementia, corticobasal degeneration, Huntington’s disease, and progressive supranuclear palsy. The journal includes empirical, theoretical and review papers on a large variety of issues, populations, and domains, including but not limited to: diagnosis; incidence and prevalence; and educational, pharmacological, behavioral and cognitive behavioral, mindfulness, and psychosocial interventions across the life span. Animal models of basic research that inform the understanding and treatment of neurodevelopmental disorders are also welcomed. The journal is multidisciplinary and multi-theoretical, and encourages research from multiple specialties in the social sciences using quantitative and mixed-method research methodologies.
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