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倾听父亲们的心声:抚养唐氏综合征患儿对个人的影响。

Listening to fathers: Personal impacts of raising children with Down syndrome.

作者信息

Marshak Laura E, Lasinsky Emily E, Williams Courtney

机构信息

Indiana University of Pennsylvania, USA.

Private Counselling Practice, USA.

出版信息

J Intellect Disabil. 2019 Sep;23(3):310-326. doi: 10.1177/1744629518801112. Epub 2018 Sep 16.

Abstract

The aim of this qualitative study was to contribute to an understanding of how biological fathers ( = 311) believe having a child with Down syndrome has impacted them personally. Thematic analysis was used to derive meaning from responses to open-ended survey questions. In addition to describing personal impacts, fathers shared how their perspectives shifted over time and possible contributory factors. The results indicated that fathers were often deeply impacted by the experience of parenting a child with Down syndrome. The vast majority expressed positive changes in terms of personal growth; however, it is important to note that positive emotions often coexisted with more distressing ones such as anxiety and loss. Most fathers reported a positive trajectory in terms of their adjustment and many attributed it to learning that their negative assumptions about people with Down syndrome were not accurate. Implications for practitioners and researchers are discussed.

摘要

这项定性研究的目的是帮助理解生物学父亲(n = 311)认为生育患有唐氏综合征的孩子对他们个人产生了怎样的影响。采用主题分析法从对开放式调查问题的回答中提取意义。除了描述个人影响外,父亲们还分享了他们的观点如何随时间变化以及可能的促成因素。结果表明,父亲们经常受到养育患有唐氏综合征孩子这一经历的深刻影响。绝大多数人表示在个人成长方面有积极变化;然而,需要注意的是,积极情绪往往与焦虑和失落等更令人痛苦的情绪并存。大多数父亲报告说他们在适应方面呈积极趋势,许多人将其归因于了解到他们对唐氏综合征患者的负面假设并不准确。文中还讨论了对从业者和研究人员的启示。

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