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讲述包含一名唐氏综合征患儿的家庭的复杂生活。

Communicating the complex lives of families that include a child with Down syndrome.

作者信息

Cooke Emma, Coles Laetitia, Staton Sally, Thorpe Karen, Chawla Jasneek

机构信息

Child Health Research Centre, The University of Queensland, South Brisbane, Australia.

Queensland Brain Institute, The University of Queensland, Saint Lucia, Australia.

出版信息

Health Sociol Rev. 2023 Mar;32(1):19-41. doi: 10.1080/14461242.2022.2161405. Epub 2023 Feb 7.

Abstract

Families of children with Down syndrome experience complex lives and needs, yet the few existing studies on these families are written in conventional academic prose that is not optimal for knowledge translation beyond academia, particularly for busy healthcare professionals. In this paper, we Depart Radically in Academic Writing (DRAW) (Mackinlay, 2022) and present data poetry and two case studies that draw upon semi-structured interviews with mothers, fathers, and siblings, who were interviewed separately about their experiences of having a child/sibling with Down syndrome. We introduce our interdisciplinary team that includes academics and clinicians to contextualise our focus on research translation. We demonstrate that writing with creative criticality (i.e. 'DRAWing') contributes an embodied and affective understanding of research participants' stories, which is largely lacking in the academic literature on families of children with Down syndrome and the sociology of health and illness field more broadly. Moreover, DRAWing can impact audiences emotionally as well as intellectually (Richardson, 2003, p. 924), which has important knowledge translation implications for both healthcare professionals and these families. DRAWing can capture healthcare professionals' attention, prompting them to critically reflect on their practices and opportunities for improving care and treatment for these families.

摘要

唐氏综合征患儿的家庭经历着复杂的生活,有着各种需求,但现有的关于这些家庭的研究寥寥无几,且都是用传统学术语言撰写的,这种语言对于学术界以外的知识传播而言并非最佳选择,尤其对于忙碌的医疗保健专业人员来说。在本文中,我们采用了学术写作中的激进背离方法(DRAW)(麦金利,2022年),展示了数据诗歌以及两个案例研究,这些都是基于对母亲、父亲和兄弟姐妹进行的半结构化访谈得出的,他们分别接受了关于家中有唐氏综合征患儿/兄弟姐妹的经历的访谈。我们介绍了我们的跨学科团队,其中包括学者和临床医生,以此来阐述我们对研究转化的关注。我们证明,以创造性批判性的方式写作(即“DRAWing”)有助于对研究参与者的故事形成一种具身化且情感化的理解,而这在关于唐氏综合征患儿家庭以及更广泛的健康与疾病社会学领域的学术文献中很大程度上是缺失的。此外,DRAWing既能在情感上也能在智力上影响受众(理查森,2003年,第924页),这对医疗保健专业人员和这些家庭都具有重要的知识转化意义。DRAWing能够吸引医疗保健专业人员的注意力,促使他们批判性地反思自己的实践以及改善对这些家庭护理和治疗的机会。

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